No, Please, let ME do it.

Warning. This is a little snarly.

Today, after months of waiting, Maggie has an appointment to get her wheelchair repaired. I tried to schedule the appointment when Maggie would miss the least amount of school. I cancelled the bus for the day because she has to leave school early. I don't want the nurse to have to come all the way back here to get her car, so I had her meet us at school. I like to take the professionals into consideration when there is a change in the routine. I only wish that went both ways.

This is not like the emergency visits I've had to do for her headrest. This is more involved. Lots of parts will be replaced or switched out to accomodate her growth and resolve ongoing issues with the chair. I was not involved in ordering any of the parts. I let the professionals do their job. I'm not positive what all of the changes are, but I agreed to have Maggie there at 2PM for a two hour appointment.

We will be there at 2, as instructed. This is very difficult for both Maggie and me because we have to wait through all the changes and then sit Maggie in the chair to make sure it's correct. Of course I have no idea what is or is not correct because I didn't order any of it and have no idea how it's supposed to work. Her therapists did that, but now neither of them is available to come to the appointment. One doesn't work on Friday afternoons and the other is sick. This is the third rather important thing in a row that one therapist has missed, so I can't help but wonder.

While we are waiting, Maggie is without her chair. That means she cannot use her communication device. There is no place for Maggie to wait except to lie on a mat table in an office. There are no sides to this table so I have to stay right next to her the entire time to make sure she doesn't fall off. I cannot go to the restroom, I cannot do anything but sit in one place. Because someone else is usually with me, this can generally be accomodated.

But now we are on our own.

I can predict that without the professionals who are supposed to be there, something will be left out, or unavailable. Of course I won't know what it is and they will tell me to come back downtown on another day to finish the job.

I hope they will understand when I tell them I don't work on that day or I don't feel up to it.

Have a nice three day weekend. I will try to unsnarl.

To All the Ships at Sea

There is a certain sound my computer makes just as it crashes. It is different from the other dings and alerts I usually get. This single, loud, somewhat prolonged “beep” is generally followed by a blue screen.  Obviously, it is not a pleasing sound.

On Wednesday night before Thanksgiving, Maggie’s talker was making that noise. There was no blue screen, but something was clearly wrong.  Because I am such a techie, I went right to work. I looked at the device, turned it over and turned it off and back on. If that did not work, I was lost. It did not. The talker came back on fine, but there was some weird code on the screen. All the icons were there, but instead of the words describing what they were, there were just lines. This was new, different, and more than a little troubling.

The thought of a four-day weekend without Maggie’s dynavox was daunting indeed. This is her lifeline. It’s not only how she communicates, but it’s how she keeps herself entertained for hours on end. With the long weekend looming, I could not (or would not) contact anyone to trouble shoot.   I took it down, turned it off and put it on the charger hoping it would be magically fixed overnight.

It was not. Thanksgiving morning brought more of the same loud protracted beeps every time she hit the switch. I touched one of the icons on the screen and it did not beep. Hmmm. Perhaps it is something with the switches. Could it just be on some strange setting?

In order for Maggie to access her dynavox with the switches, it has to be set on “two switch” and “scanning.”  Periodically the scanning setting defaults back to a different setting and the switches will not work. I can just fix that but this was different. This sound was something I have never heard before.

There are different settings possible for different types of users. Most users just press the icons on the screen, so the default setting is “touch enter.” There are several others but I have never really looked at them because Maggie does not use them. When I went into the settings pages I expected to see the default “touch enter” setting. I could fix that and then deal with the beeps next.

Much to my surprise, it was not on the default at all. Rather, the setting was on “MORSE CODE.” Suddenly the beeps made sense and so did the strange lines on the icons. Maggie was communicating in Morse code.  I have no idea how that happened and did not even know it was available. There is a chance that Maggie got in there herself and randomly changed it. She looked quite pleased with herself as Steve and I figured it out.

We live about three miles from the Pacific Ocean. Hopefully she wasn’t sending any distress calls out into the night. 

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.

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.

Cook please

Maggie was in her chair with her communication device hooked up and I was working on the computer when I heard the computerized voice say:

“Cook, please”

No. I would rather not. It is three in the afternoon and I am trying to finish this project.

“Mom, cook please”

Maggie, I can’t right now. It’s not time to eat and we are hanging out in here doing this.

“Mom, cook please.”

I look at Maggie and finally get that she is trying to tell me something. I ask her, “Do you want to go in the kitchen?” Her hand flies up to her mouth – her sign for “yes”. Ok, kiddo, let’s go.

That exchange happened sometime this summer. It was a huge breakthrough. Maggie was using her communication device to express something she wanted without prompting. And she improvised using the limited choices on her talker. There was no place to say, “I want to go in the kitchen.” Therefore, she got her point across using the “cook” button.

You have to think for a minute about how smart that is. Those of us who speak, read and write do things like that all the time. We take them for granted and do not realize what a complicated cognitive functions they require. It is automatic for most of us. It is not automatic for Maggie. Every step of that process is difficult and deliberate. It is amazing.

Maggie’s frame of reference is very different from yours and mine. She doesn’t eat regular food; she is fed a special prescribed medical food through a tube in her stomach. She does not cook and she does not generally even watch anyone cook. She does not spend much time in the kitchen because of the configuration of the house and the difficulty of maneuvering the wheelchair. Nevertheless, she had to employ and improvise on all those concepts to put together that particular string of words to convey her message.

Now we hang out in the kitchen a lot. I get her into the kitchen and she “cooks.” Of course, that word means something different to her than it does to me. Maggie “cooks” by opening and closing the refrigerator a hundred times and by opening any drawer she can reach to pull all the contents out. (We keep her away from the knife drawer). Before we “cook”, I have to push everything breakable or dangerous well out of her reach.

It is entirely possible that Maggie has been using her communication device to express her wants and needs for some time and I am only now noticing it. Communication by definition is a two way street. One party has to be open and receptive to the communication. In this scenario, that is my job. I need to listen closer and perhaps translate a little. What else is she trying to say to me?

Maggie may be brilliant, but her mom is a little slow on the uptake. “Mom, think please.”