Make it snappy!

Maggie sat patiently in her chair while Steve tried yet another repair of her headrest. If we can get it somewhat stable, Maggie and I can go out and have some fun. Being stuck in the house on Spring Break is no fun. I just received an email that a repair guy will come to US tomorrow! Yay!!!

Once Steve was done I knew Maggie had things she wanted to say but she also needed to eat. I asked "do you want your talker?" she signed "yes." I said, "Ok, do you want me to feed you first?" She slammed her hand down in an emphatic NO!  She wanted her talker so she could communicate. I laughed and started setting up the talker. That process takes a few minutes. I have to affix the tray and the pole and then the talker. She turns it on and it has to boot up, which takes another minute or two.

I finished and looked at her and said, I know exactly what you are going to say" She smiled wickedly and made this sentence

"Mom, breakfast now, I'm hungry." 

Food tastes so much better when it's ordered.

Steve also entertained Maggie by juggling oranges. if you're stuck in the house, it's good to have an entertaining Dad. (see I didn't even call him a Clown!)

           

Straight Talk

Maggie’s communication skills are improving every day. She tends to plateau and then jump forward with her abilities to maneuver around her communication device. Right now, she is definitely jumping forward. About a year ago she would say, “Mom, cook please” which I eventually came to understand meant she wanted to go into the kitchen. Now, in the same amount of time she gets the device to say, “Mom, I want to go in the kitchen please.” (Ok, the “please” is not always there). It is really quite amazing.


Communication is a powerful tool. If she can continue on this trajectory, she will be much more included in the world. People want to know about her and her dynavox (communication device). If she can tell them herself, it will open the door to continuing the social interaction. Of course, one must also learn to control HOW they communicate – even those using an adapted device like Maggie. Sometimes you cannot just say the first thing that pops into your head as Maggie did last night. It was in a conversation with her nurse, Fely.

When Maggie’s nurse is here, Maggie is generally in her room. There is so much to do and it takes so long that she just hangs out in there. Maggie is either in her bed or in her chair. Steve and I go in and out of her room to help the nurse or converse with Maggie or both.

Last night the nurse, Fely, was finishing her work. Fely is a very professional nurse and she usually time things so that she finishes her work just as the shift ends. During the summer, her shift is over at 9PM so Maggie is still awake and ready for action when she goes. Maggie comes out into the living room with Steve and me and we hang out together until the night nurse arrives at 11:00PM. Due to some changes in the schedule, Fely finished about 40 minutes early last night and sat down to do her charting.

Maggie would have none of this. She can see us in the living room and there is no reason for her not to be in there with us. However, the glass door was closed so we were unaware this was happening

Maggie said on her talker, “Fely, I want to go in the living room.” Fely said, “No Maggie it is too early.” (Note, Fely does not have to keep her back there but she too is a creature of habit). Maggie (again) “Fely, I want to go in the living room.” Fely, “no Maggie I will finish my charting and bring you to the living room at 9:00 when I go home.”

Pause. Maggie thinks about this development and then starts clicking away making a new sentence.

“Fely, go home”

Yup. Communication is getting better all the time. Maggie knows what to say to get what she wants. Now we need to work on manners.

Peace in the Kingdom

It is 8:12 AM and I am ready to go back to bed. Maggie left at 7:25 and I have a laundry list of things to get dome this morning, but I am exhausted. I have already put in a full day of thinking.

Maggie’s newly repaired Dynavox arrived yesterday. I waited around for UPS all day because I had to be here to sign for it. (Of course, they arrived at 5:45 PM). It comes back wiped clean so I had to reload all her information. I carefully loaded all Maggie's settings to a flash drive and put them on the repaired machine.. I was patting myself on the back so hard I may have reinjured my shoulder.

The repaired device arrived just in time because the loaner machine has been acting up in the past few days.. One of the switches would not work at all. Maggie could scroll through all the choices with one switch, but when she went to select nothing happened. This was extremely irritating for her, which means it was miserable for the nurse and for me. We were trying to convince her we could fix it but we were really just resetting it every few minutes.

The repaired one worked fine – for about 20 minutes. The same thing started happening. I could not believe it. It had to be a faulty switch. I have a couple of spares downstairs and Steve changed it for me. It has to be screwed on to the tray. (He is in charge of all crafty things as well as things involving tools or manual dexterity).  

New switch plugged in and same problem.  Arrrgh.

 By now, it is 9:30PM and Maggie is both tired AND mad. I told her we had to call the company and see what to do.  She was smashing her fist into her tray saying NO NO NO.  The thought of Maggie without any communication device all weekend was not pretty.  

I woke up at 4:45 for some unknown reason and as I tried to get back to sleep I found myself thinking about the dynavox problem.  It suddenly dawned on me that perhaps when I copied and pasted the settings from one device to the other, I loaded some erroneous code onto the repaired device.  The tech support opens at 8:00AM EST, which just happens to be 5:00AM here. I could call right away and get this fixed before Maggie went to school. I hopped out of bed. 

Let’s say that again. Tech support at 5:00AM. The coffee was still brewing and my cup of tea was not shaking the cobwebs from the brain. My tech support person, Eric, was great, but I had to tell him to slow down a few times and remind him of the time difference. We did trouble shooting on various things. He asked about the switch and I said, proudly, "no, I thought of that and I just changed it."  I gave him my theory about loading bad settings onto the repaired machine. He politely said, perhaps, but that really does not make sense. We tried some more things.  After about 40 minutes, he said, “I think we’ve isolated this to the switch.”

 Harrumph, I thought, how can that be. I just changed it.   I padded down to the deepest bowels of the basement to find the last switch in the box. I plugged it in and VOILA!  Success! The brand new switch was faulty.  My supply is now gone and I have to order more (at $30each!) but Maggie went off to school with a working communication device. 

Thus, the weekend in the Kingdom of Maggie will be peaceful; she can sit on her throne and issue edicts to us, her lowly subjects..  

Have a nice weekend. Enjoy the World Cup finals. We are rooting for the Netherlands to honor my Dutch grandmother. 

Nice segway

A couple of Sundays ago we took Maggie out on the municipal pier, which is a long curved concrete pier that forms the outer edges of Aquatic Park near Fisherman’s wharf. It is a touristy area, for sure; but the touristy areas are generally the prettiest. San Francisco, like other areas (and like humans), wants to show its best version of itself to visitors.

A stroll out on the municipal pier make Alcatraz feel so close you can touch it. You can see it in both pictures, it looks like it's just off the edge of the pier. (It's not) The pier itself is teeming with life. There are seagulls standing guard over anglers, bike riders and tourist groups. We stopped and chatted with some tourists indulging in a Segway tour of the San Francisco waterfront. I have no idea how much they pay for this, and they look silly in a group like that, but I have to admit it seems to be very entertaining. How can you not laugh when you are riding on a Segway?

It was an incredibly windy day and we were fighting the breeze every step of the way. The Segway riders were not doing much better. One of them challenged Maggie to a race wondering if her chair had more power than their “vehicles” I quickly pointed out that Maggie’s chair was manual and the only “power” was my two legs and arms. I did not want to get in a smackdown race with someone riding a linoleum roller, though I would have had a decent chance if we ran into the wind.

The tour guide, a cool looking guy in his 20s, noticed the sticker on Maggie’s tray. (see pic) It is a napster sticker that someone gave her many years ago. The guy looked at Maggie and said, “Napster!?! – girl you are old school!” Maggie beamed with pride, even though she had no idea what he was talking about. It is unusual for someone to address Maggie directly (instead of through Steve or me) and she absolutely loves it when it happens. He asked her what the buttons were for and she started hitting them immediately. I said quickly, "that’s how she talks." Maggie manipulated the buttons until it said, “Hello, My name is Maggie. I live in San Francisco.”

He didn't flinch at the technology or the synthesized voice but simply said, “ahh, a local, eh? I thought you looked pretty cool.” She was beside herself. Then, taking her into his confidence he said, “Watch this, city girl.” He instructed his tourists to race to the other end of the pier giving them directions and warning them to be careful and not run up the back of each other. They took off each jockeying for position. The tourguide turned to Maggie and said. “I do this to groups all the time. It’s pretty pointless to race, all Segways  go 9 mph at top speed, but it gives them something to do.” He took off after his charges with a wave.

Maggie was delighted and Steve and I just looked at each other and grinned. Occasionally people really surprise you. I think tourists really are seeing the best version of San Francisco with this guy showing them the way.

Don't hate me 'cause I'm beautiful!

Maggie's trying our new words on her talker.Her basic sentences sometimes contain adjectives or adverbs now. Any advance is amazing because of both the physical complexities involved in maneuvering around that computer and the abstract connections required. They don't always hit the perfect chord, though. Her sentence today made the nurse and I laugh.


"Mom, I am beautiful, unfortunately"

Her beauty is just another cross for her to bear.

Schooled

One of the many things accomplished this week was Maggie's IEP (Individualized Education Plan). That's an annual meeting of all the members of Maggie's team to discuss progress and set goals and services for the next year. As I've said before, this meeting can be very contentious for many parents but I have never experienced that. I am always amazed at the professionalism of the various disciplines involved in her education and I learn something every year. This year was no exception. Maggie's team includes her teacher, a teacher of the visually impaired, physical and occupations therapists, speech therapist, and specialists in orientation and mobility, augmentative communication (aac) and assistive technology (at). Because this is Maggie's first year in high school the members of the team changed. Only the augmentative communication specialist and the teacher of the visually impaired worked with Maggie before this year. It amazed me how well folks had learned about Maggie's complicated needs.


Maggie cannot talk at all. She never could though she used to make a lot of noise. Now that she has the trach she can't even do that. All of her education is reliant on her ability to communicate so her communication always becomes the focus of the IEP. The report by the speech therapist and augemtative communication specialist becomes very important because Maggie's progress or needs in that area will affect all the other areas. The report was thorough and helpful. As I looked at the last page I noticed it said Maggie has a "mild to moderate" receptive and expressive speech and language delay.

Mild to moderate? Really. I thought to myself she cannot talk at all, how can this be classified "mild to moderate." I wasn't challenging anything but I wondered about that. I said, "what does it take to be severe". All three of the speech people (speech therapist, aac and at) at once said "OOOOOH you'd be surprised" Of course speech and language is not limited to speaking. There are many folks who can talk but do not have the language abilities that Maggie does. Maggie understands pretty much everything anybody says so her receptive language is good and she has developed tools to express her needs and wants and uses technology to get those across.

I consider myself to the THE expert on Maggie. Turns out mom needed to be schooled a little bit. I learned again, that I'm ONE of the experts, but Maggie is very lucky to have all these highly trained professionals in her corner.

Say what?

Maggie’s communication device is an amazing thing. It is a dynavox DV4 and has capability for unlimited speech. Maggie’s abilities fall far shorter than the dynavox, but it gives her unlimited opportunity to expand her communication. The picture shows a page of forty choices, many of which lead to other pages with 40 choices. Soon Maggie will graduate to a page with 60 choices.

Maggie and all her classmates use communication devices. They “talk” to each other all day and that is the best practice. Maggie can ask for meals, tell us when she needs changing, call mom, dad her brothers, her teachers and all of her nurses by name. Every week she shows some new level of understanding and it is quite amazing. She also loves to tell jokes using the device. She starts laughing before the questions are out and slams the button to get the answer out there as quickly as possible.

The “voice” on the Dynavox is a flat computer voice. It speaks exactly what is written. Stray punctuation or typos are spoken. It definitely makes you cock your head when you hear the word “comma” spoken mid sentence. Also spelling or uncommon words or names must be phonetic. Maggie has classmates named Grimaldy, Cui-ping and Tyre. These are not recognized by the dynavox and I have to spell those Grimaawldee, chow peng, and Tie ray for correct pronunciation.

Every school day Maggie shares her “news” from home and brings back news from her school day. This, of course, requires programming time. It is not difficult at all (though I am still the only one in the house who knows how to do it), but it takes about 10-15 minutes. I need some of that time to come up with something clever. Midweek news is the hardest because there is generally nothing to report. I never let the facts, or lack thereof, get in the way of a story, though, so I can generally come up with something. News on Monday and Friday is easy because we can talk about the past or upcoming weekend.

This morning Maggie’s news was about the super bowl. She is informing her classmates that we are rooting for the New Orleans Saints (all due respect to Colts fans, but it is just time). You really have not lived until you hear a computerized voice with zero inflection say:

WHO DAT!

Feliz Cumpleanos

There was a party on Friday afternoon in Maggie’s classroom and I was invited. It was Juan’s 18th birthday. Juan is Maggie’s “boyfriend.” He has significant disabilities himself, but he uses what he has to his advantage. He is the only one in the class who can walk, so he is able to position himself next to Maggie all the time.

Juan is unable to speak and uses a dynavox as well. He does not need the buttons like Maggie does, but just uses the communication device directly. When Maggie wants to talk, she hits one switch to move the “cursor” to the thing she wants to say and, once there, uses the other switch to actually say it. When Maggie gets going, she can fly through the screens and selections to say exactly what she wants. When she is not in the mood, she just sits there smiling as if to say, “You know what I want, just do it.” Juan will have none of that. He takes her hand and hits the button with it as if to say, “C’mon, get with it.” Maggie responds to him.

Maggie did not need any prompting on Friday, though. I programmed her talker so that she could say "Happy Birthday Juan" in spanish, which is the language Juan's family speaks at home. It's simply Feliz Cumpleanos. However, that took a while becaue the dynavox doesn't recognize spanish words and I had to spell them phonetically. I believe I entered it "Felleez coompleeaanyos." He loved the message and so did his mom. (Maggie's making points with the mother.)

There are six kids in Maggie’s class and I assumed the party would be those students, the adults in the class and a couple of parents. I arranged my day to get to Juan’s party at 1:00PM, just as it was beginning. Or so I thought. When I arrived at 1:05, there were at least 25 people in the room. Juan made invitations on the computer in the classroom the day before and went all over the school distributing them. Even the principal stopped by. It was a happy group of people.

Juan was decked out in a suit and tie, and he looked marvelous. He greeted each person, including me, with a big hug. When the noise became too much for him he put on his headphones for a few minutes until he was ready to deal with it again. He is a man who knows how to handle himself.

I did get one picture of Maggie and Juan with my phone. However, I missed the best part. I received an important call and stepped out of the room for a minute. While I was gone, Juan was dancing with Maggie, holding her hand and twirling her around in the wheelchair. The teacher and nurse were looking for me, but I was in the hallway. Of course, it happens the minute I step out.


Then again, maybe it is no coincidence. Juan saw the old lady was gone and made his move.


Gratitude: I am thankful Maggie has such wonderful people around her. In all honestly, I am also thankful Maggie is not 18 yet.

High School

Maggie has been a high school student for a full week now. She loves it. She loves the kids, the noise in the hallways, the bus ride, the teacher, everything.

Except the new schedule.

The morning bus is here at 7:10 A.M. That means she has to be dressed, cathed, fed, in her chair, hair brushed, talker programmed, oxygen tank filled, suction machine charged, everything loaded onto the back of her chair, down the elevator, through the basement and out in front of the house 75 minutes earlier than last year. Most of this happens while she is asleep. I finally wake her to put her jacket on and get her into the chair. She gets on the bus half-asleep.
This ungodly hour is forcing me to get things ready at night. I have a new system. I program the talker, put it in the bag and on the chair and park the chair where it can reach the charger. Same thing with the suction machine. That way they are charged and ready to go and already loaded. I have to do the oxygen in the morning because it would just bleed out overnight. That only takes a minute, though.

Her new classroom is very different from the middle school. The setting is a very large very bright room, which is great. It is a kitchen – two actually - and hearkens back to a day of better budgets when schools offered cooking classes. Apparently, an occasional class utilizes the ovens etc, and it will be part of the curriculum for Maggie’s class. That will give Maggie and her classmates the opportunity to mingle with the typical student population on their own “turf,” which is good.

There is another distinct change this year. Maggie is not the only student with a communication device. For the last two years in middle school, she was the only one routinely using the “talker”. She received A LOT of individual attention, which was great, and she was the QUEEN BEE for sure. Now, five of the six students in her class have them and use them. Maggie will have to earn the Queen Bee role now. (I have little doubt that will happen). Instead of the individual attention, Maggie will have to keep up with the other kids and that will likely result in huge strides in her abilities to manipulate the device.

When I went into the classroom, I was greeting the students. Three of the boys I know from before. There is one other boy and a girl that I did not know. I was greeting the girl and I heard a synthesized voice say, “Hi, my name is Juan. Hi my name is Juan.” It took me a minute to realize he was talking to me. (There is LOTS of activity). I went over to him and said “Hello Juan, I’m Sally, Maggie’s mom. It’s very nice to meet you.” He shook my hand, beamed at me and stole my heart.

I hope he and Maggie go to the prom.

Silver linings

There are always good things in bad situations. All you have to do is look.

Even though last week was consumed with details of planning and attending my aunt's funeral, which was tiring and sad, it was wonderful to connect with cousins and other relatives.

As I was looking through a giant box of jewelry from my aunt's apartment I had a brilliant idea. My aunt had a ton of stuff - not valuable, just accessories that she wore beautifully. Things that look ridiculous on most women were always just right on her. I floated the idea of all the women wearing one of her necklaces at the funeral. My cousins and sisters were all for it. There were probably 40 or 50 of us bejeweled in AM's finery at the funeral.

Another good thing was more personal. My cousin Peg from Seattle spent some time at my house on Saturday before getting her flight back. Because she lives in Washington she has not spent much time with Maggie. We sat on the back deck having some cheese and crackers while Maggie sat in her chair listening to her nurse Josephine read a book. I attached the talker and Maggie told Peg jokes and "conversed" with us. I watched as Peg realized how smart Maggie really is.

Don't get me wrong, people believe me. They believe what I'm saying. But experiencing it first hand is something different. And (selfishly) I love to watch the realization hit home. As Maggie bored of talking with us she maneuvered her talker and said "Josephine, Book please." Peg just looked surprised and delighted. She said, Wow!, she wants Josephine to continue reading."

I just smiled. Fortunately Peg was so taken with Maggie's smarts that she annoyed her rudeness. She was DONE talking to us.

Finally I also learned that my cousin's son Davis is an "almost daily reader" of this blog. So hey Davis!! Now I know I have a connection all the time. That's better than a silver lining.

Is there a problem here?

A while back, someone asked how Maggie tells me if there is a problem or if something is hurting her. Specifically they wanted to know if her talker had a button or buttons for that. The answer is yes, but no. (Don’t you hate that?) The talker does have several buttons to describe various problems, but that is not how Maggie tells me. The way she communicates these issues depends on the specific problem. Physical problems, like pain, are communicated differently than physical needs such as hunger or environmental and entertainment needs. Technical issues with the talker present another challenge entirely.
If Maggie has a physical problem, I just know. I cannot really explain it, any more than any other mom can explain why they understand the different cries of their newborns. You just know. It might take a while for me to understand exactly what the physical problem is, but I am like a detective zeroing in until I figure it out. It is not just mother’s intuition, though. Anyone who spends any time with Maggie can read her cues easily when it is a physical problem. Her entire affect changes. I may be faster at figuring out the precise problem, but she does manage to communicate the existence of a problem.
For physical needs, she tends to use the communication device. She has only recently started using her “I’m hungry” button, which she follows up with “Can I have breakfast/lunch/dinner/snack.” That amazes me because she always uses the right meal that corresponds with the time of day. Remember, she eats exactly the same thing every two hours, so there is no reason to differentiate, but she has figured that out with her own innate sense of time. Her newest trick is the “I have to go to the bathroom” when she needs a diaper. That is very important and it will help her as an adult. For now, it is a way to communicate and a way to get attention. We can finish a diapering session and just get her back in the chair and strapped in and she will hit “I have to go to the bathroom”. I just look and say “NO! You don’t.” That is cause for uproarious laughter by her.
It is more difficult when the problem is technical rather than physical. For example, her communication device can be glitchy, programmed incorrectly or just have a loose connection causing it to work improperly. She cannot use it to communicate those problems if it is not working. For one reason or another, I may not realize there is a problem right away. In those cases, Maggie starts smashing the buttons and pounding on the tray until she gets my attention. Inevitably I will say,” Is there a problem here?” If I catch on soon enough she will smile, but if it has taken too long to respond, she just looks wild-eyed and keeps slamming the tray. I say,” hold up there Tiger, I can fix this.”
If she doesn’t like the music we are listening to or the book we are reading, she just slams her fist down – her sign for “NO!” over and over and over again. Generally, we will let her do this about ten times before we innocently say, “Oh, I’m sorry do you want something else?” That is another cause for laughter. If she doesn’t cut it out, I tell her to stop shouting and let us fix things. If it is bad enough I walk away, I do not want to reward that behavior. I figure slamming her fist down loudly is the equivalent of another kid screaming to get what she wants. When she stops, I fix it.
I am glad that she uses both high and low tech to convey her message. If she is completely technology dependent, she is out of luck when it is on the fritz, or mom forgets to charge it or some such thing. Her yes/no signs, affect, temper and laughter are always present and never need charging.

Dyna-Movie

ok, Here's the first attempt at movie making with my flip camera.It's Maggie using her dynavox and it's less than 2 minutes.

Since I've described it so often, I thought you might want to see it first hand. And if not, at least I figured out the video camera for now. There is a typo in the title page that I thought I fixed, but it's not there forever. Ah well.

Generally she doesn't need this prompting, but me holding the camera was fascinating for her. She is operating the dynavox using the two switches mounted on her tray. We call them the "mover" and the"chooser" They are a bit like a mouse. One allows her to move it and the other to choose or select when she gets where she wants. She has to use the "chooser" to navigate between pages as well.

You will also see a demonstration of her yes and no - She will show you that "yes" is putting her hand to her mounth and "no is putting her hand down.

I cna't figure out how to embed it here,so I'll just give the you tube link

http://www.youtube.com/watch?v=aIRiqzuj5Tk

I solemnly swear

Maggie swore in class yesterday. I have a daughter who cannot talk, cannot emit sound, does not have swear words on her communication device, and she said HELL out loud in class.

You need some background to appreciate this.

Vocal speech is a physiological phenomenon. A person can emit sound because they vocal chords move as we exhale and they can control their mouth and tongue to formulate words. The ability to talk and gift of gab are different from the physical ability to make sounds; they are complicated intellectual and neurological functions. Most people effortlessly combine the two abilities and engage in meaningful speech. Some people lose or lack one ability or the other. Babies have the physiological ability, but lack the intellectual function/maturity and have not developed the neurological pathways to talk. (They quickly figure it out, though.) Sometimes a stroke or other neurological event disrupts the intellectual functioning or the neurological pathways. Likewise, but less frequently, something happens to the physiological area. For example, damage to the vocal chords or even surgical intervention due to cancer affects one physically but the intellectual function remains intact.

Maggie’s inability to talk is mostly physical for a couple of reasons. The damage to her brain, commonly known as cerebral palsy, affects her motor skills, including the movement of her mouth and tongue. She could make sounds, but formulating words was very difficult because of the complex movements required. The intellectual functioning is there. In fact, she could say a few words (MAMA was the best!) and she could use tone and volume to convey messages. When she got the trach in 2007, there was a disruption in the physiology and she could no longer even make sounds. She does not make any sound when she laughs, cries or screeches in joy. It is a simple matter. The trach tube itself prevents air from coming through the vocal chords. She exhales through the tube, not through her mouth, hence no sound. Maggie needs the tube to get enough oxygen so the trade off is an easy one.

Ok, maybe not EASY.

There is a valve that can go over the trach forcing air to go through the vocal chords thus allowing a person with a trach to speak. Maggie is not a candidate for that because 1) she cannot tolerate having her trach covered for even a few seconds because she is totally trach dependent for oxygen and 2) she still has the motor impairment that prevents her from formulating words efficiently.

Yet she finds a way. Remember, that intellectual functioning and her strong personality are both working overtime.

Maggie has learned that tilting her head a certain way will block off a portion of the trach, not so much that she cannot breathe, but enough to allow some air up through the vocal chords, and make noise. It is not reliable. She cannot always pull it off and sometimes she does it unintentionally, but it always delights her. When she is laughing hard, she can sometimes emit a high squeal for a second. Occasionally you will hear an enthusiastic YEAH!

Apparently, Maggie is perfecting this technique. Yesterday she said HELL while working in the classroom. The teacher and the nurse both heard it and asked her if she meant to say that. Maggie, being delighted at the sound and the attention, signed an enthusiastic YES! They asked if her parents knew she said that and again she proudly signed YES! (Really? Thanks for that, Mag. Just throw the parents under the bus.)

Her inability to speak does not prevent her from lying or swearing. I could not be prouder.

We are staying in this weekend. Maggie is grounded.*

In addition, maybe I will start watching my mouth.**
______________________________________
*before you comment, please know I am only kidding about grounding her

**this is true.

What did she just say?

Every day Maggie comes home from school with her “news” programmed into her Dynavox (communication device). She hits the buttons, maneuvers the dynavox to her “news” page and lets us know what went on during the day. Her teacher programs that at the end of every single day. It takes several minutes to do and I appreciate his efforts.

Of course, it is my job to do the same thing when Maggie goes to school. I program in the “news” from home and she shares that with her classmates. I try to do it as a 15 year old would and use interesting phrases and sayings. It is difficult though for several reasons. First of all, (and this may shock some of you) our life is not that interesting from day to day. Often her news is something like, “my house is so boring. Mom had a meeting and Dad came home late so I was stuck with the nurse.” Blah. It’s necessary to spice things up a bit. Another difficulty is the voice output itself. It is not a human voice, but a synthesized computer voice without intonation. The delivery is very flat. If you put an exclamation point at the end of the sentence there is an almost imperceptible rise in the speech pattern. Same goes for a question mark. The last word of the sentence is slightly different which indicates it is a question.

To compensate for that, we try to use words and sayings that are more interesting but still acceptable for school. Though the lack of intonation may turn some people off, they are more likely to listen if the words are interesting. They are sayings that would ordinarily demand a lot of intonation and expression. They really hit the mark and become hilarious with the flat delivery. The contrast between the sayings and the delivery is entertaining and gets the attention of people. One of our standards is “sheesh!” when Maggie wants to convey frustration. Her teacher loves that. Often her news will describe some angst of her school day and finish with “Triple sheesh!” Every time Maggie hears that, she laughs. Other sayings in this ilk are “ay yi yi”, “Holey Moley,” “Yikes Stripes,” and the indignant “what is the world?” [Try saying any of those in a voice with zero intonation…it’s difficult)

I recently stole another such saying from a follower of this blog. She always has these upbeat posts and I’ve noticed her use of “woo and two hoos” periodically. I put that on Maggie’s talker on Friday (describing the upcoming weekend) and it was another huge hit with the kids and especially with the adults in her class. Maggie was particularly proud of herself.

If anyone has suggestions of sayings like these, lay ‘em on me. Maggie is always looking for new material. Her's a picture of Maggie's dynavox . It's mounted on the front of her wheelchair and she uses the switches on the wheelchair tray to work it. - you can see the various pages listed - each is like a folder with additional stuff behind it, and she knows how to get where she needs to communicat. If youlook closely at the picture youmight be able to see "mom come here" at the top of her screen. She found those words and then hits the button to make it say the words written there. "Mom come here" is a HUGE favorite.

For you information “sheesh” “yi yi”, “Moley” and “hoos” are not recognized words in spell check. We are not picky about things like that.

It’s all phonetic, baby.

Mom, What are you DOING?

I was surprised to learn that Maggie was in trouble in school yesterday. It seems the class met for their morning meeting and Maggie did not have any “news” to share. I did not understand that at first. When I heard her news from school, I understood that she refused to share her news, which was surprising enough. However, when the nurse arrived to wait for the bus I learned that in fact Maggie’s news was not on the computer at all. That is strange, because I know I programmed it, but apparently I forgot to save it. Or I have reprogrammed some other important page on her device that will rear its head at another inopportune time. Time will tell.
Maggie’s voice, homework, and overall cooperation are dependent on her forgetful, technology challenged and often-overwhelmed mother. I can barely keep myself together and I am supposed to make her look good too? Puh-leaze.

Fortunately, because of Maggie’s good nature and mischievous outlook she LOVES it when I screw up. She finds it hilarious when I am trying to “reason” with her communication device or accidentally press “clear” right when I am done programming it. She stiffens up and laughs her head off, especially at the predictable “&*$@*!%#!” that follows. When Dad says,”Maggie, what did mom say” she really cracks up.

Maggie loves the rushing around in the morning. She howls with laughter at me asking where she has thrown her other sock. She is used to having me brush her hair as we descend in the elevator generally with her shoes balanced on the back of the chair. She smirks when the nurse arrives and notes some piece of equipment not on the chair so that I have to run upstairs and get one more thing while the nurse puts her shoes on.

The thing is Maggie likely knows well before I do what I’ve forgotten, or that I’ve failed to program the computer correctly, or that we’re going to have to really rush to meet the bus, or whatever the issue is. She knows everything but she is dependent on me to be able to communicate it. Since I am clueless, she just waits for me to realize it or for someone else to point out the mistake and then she laughs and laughs. The payoff never fails to entertain her.

It is a good thing Maggie finds my ineptitude so entertaining. Can you imagine if she was a perfectionist that had to rely on me to be her voice and the one in charge of the presentation she make to the world? You could add an additional set of problems to her already long list. She is stuck with me and my flighty ways, so it is a very good thing she has a sense of humor.

Say what???

Maggie is 15, and 15-year-old girls can be mean. Maggie is not immune from this despite all her disabilities and medical issues. Apparently, she was mean to her friend Sierra the other day and really hurt her feelings.

I have written about Sierra before. She is a girl who befriended Maggie – really the first to ever do so. Maggie’s world is limited socially because of her situation. All of her friends were always other special ed kids who had parents with whom I liked to socialize. They were “play dates” way past the age your mom should be picking your friends. The rest of her friends were the adults in her world. Maggie did not have any control over her social life. I knew that and wanted it to be better, but if I tried to control that, I was manipulating it.

Then she met Sierra. I think it was last year that Sierra and the other girls started coming into Maggie’s class. Sierra led the charge and Maggie now has several typically developing friends. That has done wonders for Maggie. She likes pop music because Sierra and the girls like it, she wants to wear certain clothes because Sierra and the girls wear them. All appropriate social stuff for a 15 year old.

Maggie used her communication device to “diss” Sierra in speech class the other day. Sierra does have some learning issues and she attends a group speech class with Maggie. Everyone in the class prepares a sentence to share. Maggie uses her communication device and the other students use pen and paper. Then they take turns sharing. As soon as Sierra started speaking, Maggie hit “whatever” on her talker and then “Speak Up, Sierra.” Sierra’s feelings were really hurt.

Maggie is getting better at her communication device and she KNOWS exactly what she is doing. Yes, that is a huge breakthrough, but turning on Sierra is not smart. According to the nurse who was with her it was very clear that Maggie knew what she was doing and was not kidding. Sierra was shocked. Maggie used her talker to apologize, and Sierra forgave her.
Maggie is learning more and more the power of communication, not just positive, but negative. Of course that is important because as the saying goes “words hurt”, even if they are coming out of a synthesized machine. She may be exploring that concept and Sierra is a trusted place to practice, but Maggie has to be careful she does not lose the friend that changed her world.

The thing Maggie has to learn, and probably already knows, is if she wants people in her world she has to be MORE welcoming and nicer than others are. Her wheelchair, trach, suction machine, communication device, feeding tube, attendant and just the amount of space she requires in a room keeps people at bay. She will have to compensate for that with kindness to make people feel comfortable. Maggie is very good at using her smile to put people at ease and now she has to learn to use communication the same way.

It is just teenage, middle school drama, with a techno-twist. Maybe they can do a sequal of "Mean Girls" with a special ed, augmentative communication theme. Do you think Hollywood is ready for that?

Pipe Down

Maggie’s class is very small. There are only four full time students assigned to the class. Other kids come in for part of the day, but generally, it is intimate. Lately it has been only three kids as one is still recovering from surgery. She will be back next week, though. Until then it is just Maggie and the boys, “Y’ and “G.” All four of the kids are in wheelchairs so there is a lot of equipment in the room. In addition, the class focuses on augmentative communication and all the full time students are non-verbal. Maggie has additional medical challenges that the other kids do not have to deal with, but she has an advantage over the two boys in a different way. She comes from a family where English is the first language.

Imagine if you can, a child trying to overcome his physical handicaps and inability to speak by using augmentative communication – and having that “augmentative communication” taught in a language you do not hear at home. It is very difficult. “Y” is Chinese and his family does not speak English at all. “G”’s family is Spanish speaking. They are able to speak English, but do not do so at home. That puts them at a tremendous disadvantage trying to learn a communication device that is speaking a different language.

It is particularly difficult for “Y” who only recently joined the class. He is still getting familiar with the concept of being able to communicate. It is frustrating for him; and when he’s frustrated, he tends to scream. Then when he gets the feedback for screaming, he screams again. It can be trying for everyone.

The other day Maggie and I were in the kitchen and she was jabbering away on her communication device. It is normal enough for us that I was only half paying attention to her. I was just responding to what I heard without really listening. (Oh, come on now, other mothers do the same thing). I realized after a bit I didn’t know what she was saying. When I finally stopped to really listen I heard something that sounded like “Moo CHO.” I went over to her talker to see which button she was hitting, but she had moved off that page. I asked her to go back and press the “Moo CHO” button again. She started navigating back to that page.

I figured it was either a mistake or she was saying “mucho” in Spanish. Keep in mind, the communication device speaks phonetically and it could have just been reading it wrong. Often when I am programming it, I have to misspell words so that they will be pronounced correctly. (For instance: “let’s read a book” comes out "let’s red a book" so I spell it “reed”)

She found the button and hit it again. Apparently, Maggie also speaks Cantonese. Moo CHO means stop screaming. The whole read out is “Stop screaming. Moo CHO.” I was very impressed. I asked Maggie is she says that to “Y” and she said yes. I asked does he still scream a lot and she just hit “Moo CHO” and started laughing.

Pretty cool. I've always said Maggie was the one child who cannot talk, but can still "talk back," Now I have to add that she cannot speak, but can bark orders in several languages.

She gets that from me.

Also, Maggie received a new jean jacket from her Aunt Dianne yesterday. It just arrived in the mail for no particular reason. We’ll call it an early birthday present. She looked pretty cool heading off to school this morning.

Tell me More!

Maggie is always working on her conversation skills. Because she uses a communication device, back and forth communication is very difficult. Maggie is limited by phrases already in the machine or by the small sentences she can construct. The pace of the conversation is generally very slow; and those who even understand that she is trying to converse sometimes do not have the patience to wait for her to find the response she wants. Often the appropriate response is not programmed into her device, and then the wait is even longer for her to figure out a way to respond.

Accordingly, the teacher and speech therapist and I decided we needed to make pages on her device that might lend help her hold an actual conversation. It is a work in progress. Her homework every day is to have a conversation with someone and really try to use these pages and switch to constructing sentences when she has to. Yesterday I decided to sit at the computer while we conversed and I wrote the entire exchange down.

Maggie starts the conversation. My responses – or anything I say – are in parentheses. Toward the bottom, she is constructing the sentences. The “…” means she is finding the right words. FYI, the following took about 10 minutes.

(Hey Maggie, we need to do your homework. Why don’t you start a conversation with me?)

Have you seen any movies lately?
(Well, I haven’t been to the movies in a long time, but I watch movies on TV. How about you?)
That’s horrible.
(It’s not horrible, I wouldn’t use that word. It’s fine.)

What do you like to do on weekends?
(I like to go to the park with you and dad and go to the museum)

Tell me more.
(What do you want to know? We hang out for a while, and then walk over to Golden Gate Park, sometimes with the dog, sometimes without. You’re with us, so you already know.)

How was break?
(What break? I NEVER get a break.)

Laughs. “Tell me more”
(There is nothing more to tell. Mom’s work ALL THE TIME)

Laughs. Are you doing anything tomorrow?
(I am going to keep working on our financial information. I will be sitting at the computer all day. It is boooring)

Laughs. Tell me more
(There is nothing more to tell without boring you to death)

What are you doing for Spring Break?
(Well, I don’t really get a spring break, now do I?)

Who did you go with?
(Who did I go with where? That doesn’t make sense. Can you ask another question?)

Laughs uproariously.

Long break while Maggie searches through her computer pages

Mom…is…good.
(Thank you).

Dad… is… good.
(Dad will be happy to hear that but he’s upstairs right now.)

I ... am …smart.
(You are, Mag.)

Mom is good, Dad is good, I am smart. [note, once she creates the sentences they are saved on the top and she can use them over and over again until she clears it]

{Clear} I... am … good.

Mom … come here.
(Ok)

I am good… mom.
(Right-o, kiddo)

Maggie is beyond delighted with this exercise. Obviously she has a long way to go, but the way all of us learned to converse was by DOING it. She is behind the 8 ball not only because of her disability but also because she has not had the experience of participating in conversations. People talk TO her or AT her but almost never WITH her.
The phrases like “tell me more” are great because it allows the person to be engaged in the conversation, but Maggie uses it instead of finding her own things to say. Therefore, we will continue these conversations.

Every kid should be able to talk back to her mother. .

Face this

Yesterday morning Mag and I were going through the morning routine. I was chatting and asking her questions. She was laughing and answering "Yes" and "No" with her hands. She was headed to the museum with Dad and was excited and happy. She was having so much fun I grabbed the camera. This was her smiling face:

Then I asked her if she had fun visiting her friend on Saturday. Her friend had surgery on Tuesday and is in the hospital. Maggie and I went up there to visit. The child is doing well, but there is pain, for sure. She, like Maggie, cannot talk and uses a wheelchair. When they tried to move her to the chair, her pain was obvious. As soon as I brought up the visit, Maggie's whole affect changed. She stopped laughing and looked at me like this:

She was trying not to cry. I still had the camera and asked if she was worried about her friend and she gave me a very slow "yes"response. I reassured Maggie that her friend was on the mend and that she, like Maggie, is a tough chick. That cheered her up a little.

I'm sorry that I made her sad, but I'm so proud of her for worrying about her friend and for her ability to convey that. She's was laughing again in just a couple of minutes. Don't worry.

You can tell why it's not hard for me to understand her. She's pretty clear.

The Sounds of Silence

Assuming one tells the truth, the most direct way to communicate is by talking. People will understand you fast and best you say what you mean and mean what you say. However, communication takes many forms; talking is just one of them. We use non-verbal communication all the time, whether we realize it or not. A raised eyebrow, a shoulder shrug or even a facial expression can reveal more than words ever could. We “read” posture, expressions, and gestures to understand the people around us. Anyone with a pet relies on non-verbal communication. We also communicate with sounds other than actual words. We giggle, sigh clear our throats, drum our fingers and do dozens of other things just like that. We find ways to communicate because we need to connect with one another.

When Maggie was younger, I knew if I could change only one thing about her disabilities, it would be her inability to talk. The wheelchair was no big deal, the feeding tube, catheters and even the diapers were manageable. I would have her be able to talk to me. If only she could TELL ME what she was thinking, feeling, etc.

For various reasons I do not really feel that way anymore. Things have changed over time. My fears are more profound as are her needs. If I could only fix one thing, I would have her be able to BREATHE. As she got older and a bit bigger, her disabilities overwhelmed her respiratory system and she needed the tracheostomy to survive. Breathing is more important than talking. In addition, though, Maggie does not need to tell me what she is thinking; she communicates it in other ways. And I understand her.

Communication is, by definition, two ways. One party has to receive what the other communicates. Maggie’s receptive communication skills are excellent. She understands words, nuances, moods and every other form of communication. It is not automatic with strangers (for Maggie or for any of us), but for people she knows, she just “gets it.” She easily demonstrates her emotions by facial expressions, gestures etc. She uses her communication device as a tool as well.

The one thing Maggie cannot use is verbalization. She used to, but not anymore. Her “voice” is silent. Her laugh and cry are silent. She used to screech for entertainment, but that too is silent. The placement of the trach means air that would generally go through the vocal cords (and produce sound) is coming out through the tube. If I hear any sound from Maggie, I spring into action because I know one of two things is going on. Either the trach tube needs to be cleared, or worse, the tube has dislodged. It was freaky at first, but not so much anymore. It is just part of who she is. It is ironic, though. I used to wish she could talk and now any sound from her means she needs help.

Maggie has found things to substitute for her voice. If the communication device stops working, Maggie just bangs on the tray of her wheelchair. If she wakes up and someone is not right there staring at her, she kicks the side of the bed until someone comes to her. She communicates her wants and needs.

I miss a few things. Maggie had the BEST laugh. She would laugh so hard she would have to stop for air and it always ended with this gleeful sound as she got the air she needed. I would love to hear that laugh again. She still laughs, but it's silent. Once in a while we'll hear a little peep if she gets into a certain position, but other than that, it's silent.

Maggie was able to say one word before the trach placement. The word was "mama." She used it to get what she wanted, to communicate her pleasure or displeasure, changing tone and pitch of her voice. If I was not home, she said it in a demanding way that was “Where is she?” If I walked in, she said it in a jubilant way, to welcome me back. If she wanted to bug me, she said it over and over and over and over again.

You know what? It never really bugged me. I would give anything to hear that again.

We communicate fine without that one word, but it was always nice to hear.