Growing up and ditching mom

I had a bit of an epiphany the other day. Usually i am stressing about how tied down i am. Finally i started looking at it from another angle and i realized its Maggie that needs more freedom from me.

Maggie had the opportunity to socialize with some cool older folks who are accomplished AAC* users. It was great. Maggie was a little intimated but that was appropriate. She was younger than all of them and didn't know them very well. But there will be more opportunities and she will get more comfortable.

I know Maggie can hold her own communication wise when she's comfortable in a situation. I just received this picture from her classroom via text. It's a compound sentence she made on her dynavox. That is incredibly difficult to do and she does it with abandon.

If you can't read it, it says: Miss Laura, I am excited because it will be spring break and Josephine is coming to see me today.  (FYI - Miss Laura is a para in the classroom and both of those statements are correct.)

Maggie just needs the social confidence that she will gain by going on outings withOUT me. Maggie needs more freedom and a "voice" of her own.Hence Maggie now has her own Facebook page (Maggie McDonald). We have to start somewhere and this way so that she can communicate directly with folks. I will be her translator for a while but eventually she will get it on her own.

I may be in trouble when she figures out how to pay me back for all the pictures of her that I have posted. In fact, we ALL may be in a little bit of trouble.


*AAC is assistive and augmentative communication. Maggie's dynavox is an AAC device

Communication and Art

I never posted about the panel presentation that Maggie and I saw at Girls Rock camp. It was amazing and I said it deserved its own post but I never gave it one. The panel was made up of women who are all graduates of the CCS (California Children’s Services) program. That means each one of them has a significant physical condition that qualified them for this program of therapy and equipment and more.

The panel was comprised of six women.* One of the six was our friend Fiona. I worked with her dad when she was born and he helped me tremendously when Maggie was born a few years later. Fiona is the bomb. She uses a wheelchair and needs assistance with many things. She is also brilliant and graduates from Stanford in a couple of months.  I am sure her education will not end there.

Fiona was not the only shining star on that panel, though.  Of the six, at least four were college graduates. And I am talking serious colleges, In addition to Stanford, one graduated from Cal Berkeley, one from San Francisco State and one from St. Mary’s. One was still in college. I cannot say about the last one. She arrived late after they talked about their education. Four of the six were in wheelchairs and two of those used communication devices. They talked about their accomplishments and how they make their disabilities work in the world. One of the six was engaged to be married and she brought her fiancé with her.  

It was amazing.

They were addressing their younger peers, acting as mentors to Maggie and the other girls her age. I do not know how much the kids appreciated how amazing this was, but I certainly did. (I was the only parent in the room.)    I can tell you this: Maggie was absolutely enthralled with the women who were delivering their message via communication devices. She may not have comprehended everything they were saying (her issue, not theirs) but she definitely got that they were important people with something to say and they were using their devices to say it. 

Maggie was the only one in camp who used a communication device. With the exception of her school day, Maggie is always the only one who uses a communication device, so experiencing this was tremendous for her. And for me. 

One of those women using a device to speak was Thanh. I recognized her because she used to come to Maggie's school where she acted as a mentor. That needs to happen again.  I mentioned that Maggie went to Mission and she said (on her talker) Yes, I know her. Maggie was thrilled.

Yesterday I saw this video on a friend’s facebook page. Thanh was featured as an artist from this organization called Creativity Explored. You can see for yourself why I was so blown away by her and why Maggie was so impressed.

And I did not even know she was an artist. (She’s the third one featured)

 

* There are just as many boys/men in CCS, but this particular program was specifically targeted to the girls. And the campers were all girls too.  

Protect me from my mother!!

On July 5 we all go to court for the hearing on Maggie's pending conservatorship. Because she is 18 and no longer a minor, she needs someone appointed to make her decisions. The likely candidates are Steve and me and we are asking the judge to appoint me.

As part of the process, a court investigator came to the house the other day to get the information she needs to prepare a report to the judge so he/she can make an informed decision. The woman was lovely and treated Maggie with great respect. She explained to Maggie that we wanted the courts permission to continue to take care of her and had to ask Maggie if she agreed. Maggie signed yes.

The woman looked to me to make sure that was a yes and I nodded. Maggie showed her again how she says yes and no. I was smiling to myself because there is no way on God's green earth that Maggie understands what a conservatorship is, or whether she needs one, but we have to go through this. Besides, Maggie  thoroughly enjoyed being the center of attention and wanted to entertain us both.  The investigator seemed to get that too. The questions continued:

"Do you think your mom is the best person to make decisions for you." 
Yes.   


Sometimes a person doesn't want someone else to make decisions for them and they need an attorney to tell the judge that. Do you want your own attorney?


Maggie pauses, grins and then signs YES. 

Ok, here we go.

The woman looked at me again and I just smiled wanly and said "Do with that what you will, but I do not believe that Maggie is comprehending all of this." The investigator agreed saying,  "I'm not sure that was an informed 'yes.'"  I told her that Maggie often says yes just to please people. Maggie was laughing her head off at this, and I thought I caught a bit of a mischievous glint in her eye. I wondered what she was up to.

"Do you know what a lawyer does?" 
 YES!
Do you want mom to be your lawyer? 
(Giant Grin from Maggie and then )   NO! 
Do you want Dad to be your lawyer?
(same grin) NO!

Now Maggie was beside herself with laughter.

I just sat there trying not to laugh as did the investigator. She said she will explain things to the judge and the judge will decided if Maggie needs appointed counsel. Given Maggies answers, counsel may well be appointed. I, of course, have no say in the matter. Technically, Maggie and I are adverse parties if she takes the position she doesn't want this. The question is, can she knowingly take that position. I don't think she can - in fact I know she cannot, but I am not the decision maker for this particular question. If the court wants to appoint counsel to represent her, that's perfectly fine with me, though I believe it will be a waste of  taxpayer money.  In Maggie's case it will not effect the outcome because she obviously needs someone to be in charge.

After the woman left Maggie was very pleased with herself. I just looked at her and said, "Did you enjoy that?" Maggie YES. Ok, let me ask you again, Do you want mom to be your lawyer? YES.

I just looked at her. "Too late, chicky. I have a conflict of interest. Besides, you can't afford me."  She thought that was hilarious, even though I know she had no idea what I was talking about. .

Maggie was quite proud of herself.

Clean communication

I know this will come as a shock to many of you, but I am often amazed by my daughter....

On Friday night at the Giants game Maggie put this on her talker. 

If you cannot read it it says "I wash with Dad." I heard it and said "What!?!?!" You want to wash with dad? Is he dirty? Are you?" She slammed her hand down to say NO! and changed the sentence a little bit to say " I want to wash with dad."

She was clearly trying to tell me something and I wasn't getting it. Finally it dawned on me. Maggie was using "wash" because it sounds like "watch" She wanted to watch the game with Dad. She wanted to sit next to Steve for awhile. I asked her if that was right and she signed yes. And if I'm not mistaken there was the 18 year old "DUH, MOM" implied in that yes. 


Steve and I immediately switched places. If she can go to all that trouble to convey what she wants, we are going to give it to her. 

Maggie has done that type of thing before before and it always take me a while to get what she means. I need to listen instead of read it, because all of her language and communication is done by sound. Though they mean very different things, "wash" and "watch" sound very similar.

She does not really have a communication problem at all, I just need to speak her language, just like every other mother of a teenage daughter.

My parents never LISTEN!

Many teenagers share this lament. My parents don't understand me! My parents never listen! For most these are catch phrases for growing up and becoming independent. In Maggie's case she means it quite literally.

We all feel guilty but we have enjoyed several weeks of unbelievably nice weather. The guilt comes because we know that we need rain and snow in the mountains to avoid a drought. Still, it's hard to complain about glorious blue skies in January. Tonight, finally, it's supposed to rain.

 Up until this week it was cold in the mornings but warmed up very nicely during the day. It would get up into the 60's and even hit 70 degrees one day last week, That changed on Sunday. We woke up to overcast skies and much colder temps. The 49ers played Saturday afternoon in 60 degree weather. Sunday was in the 40's. Quite a change. Still, we didn't realize how different it was until we were well into our walk and it wasn't getting any warmer.

It's one thing for Steve and I to deal with the cold. We can run around and stick our hands in our pockets etc. Maggie, however, is a sitting duck and can't do anything to make herself warmer.  We always seem to forget that until  it's too late. She was a trooper for a while. She pulled  the string on her sweatshirt as Steve ran through the park with her.

It was a little more sheltered in the area we call "the land that time forgot" and she had a good laugh with dad. 

 But as we continued on she had clearly had enough. She first used her talker to say, "Mom is cold."  I said, yes I am,, Maggie, but we are moving. She erased that because it was not conveying the message she wanted. We walked on. Then she said "Maggie is cold." We congratulated her on a good sentence and walked on some more. Finally when we were at least a mile from home, she just said this

If you can't see it it says "Dad, I am cold, go to home dad dad dad."

We finally got it through our thick skulls that she was uncomfortable and went home. She did not change that message on her dynavox until we were inside. Then she said it three or four more times just to scold us.

We deserved the scolding. Next time more layers and a shorter outing. And maybe we bring some listening skills.

Let me put it this way...

While I do wish Maggie could speak I am constantly blown away by her ever increasing ability to communicate with her dynavox. The progress on this device seems to come in steep inclines followed by a plateau and then another steep incline. Maggie is definitely on an incline now. She is using her device for more and more things. She stops and thinks about what she is going to say and how to get the message across. That is something I have yet to learn. Here are a couple of examples.

One past weekend, Maggie wanted to go out. Our plan was to head to the park, but it was 7AM and I intended to drink some coffee, read the paper and get dressed first. She kept saying “mom I go to park” and I would absent-mindedly respond, Yes Maggie after a while.  She kept it up. Finally, I started listing off the things that had to happen before we could go. Well, Maggie I need to feed you and change you and then I need to get dressed.  

There was a pause as she formulated her plan. Then she started.  “Mom, I am hungry.”  No response from me.  “Mom I am hungry, mom water please.”  I looked at her and she gave me a wicked grin.  Ok, I know you are starving to death.  As I am feeding her she says, “Mom, I am wet.” (meaning diaper). I said, now you are just lying, but I will change you as soon as I am done feeding you.  She laughed and said, “Mom. Pants.”  I laughed and said, “Right. I will get dressed too.”  She knew what had to happen to get what she wanted and just started listing them off. We were in the park by 8AM that day.

She has developed other tricks too. The other day I turned on the television to watch something. Generally she just says, “I don’t like TV” in an attempt to get us to turn it off.  This time she said something new. She does not have the verb “watch” on her dynavox (or if she does, neither she nor I know where it is). She thought for a moment and then said, “wash TV.”  She found a word that SOUNDS like watch to convey her message.  That is really amazing. I looked at her and said YOU are a SMARTY MARTY. She just grinned and said, “Mom I am smart.”

She is also able to let me know that there are things a teenage girl just has to do.  This past Saturday she was not interested in the park at all. She told us on Friday night, “I want to go to mall tomorrow.”  I was impressed that she found the word mall, because I had not heard that before. Maggie made sure the message was not lost in the new vocabulary though. As soon as I hooked up her dynavox on Saturday morning she said, “Mom I go to Mall” and then quickly added a please to the end. I had to take a picture.

 I laughed and said and how are you going to get there. She pointed to me. Then she thought about it for a minute.  She smiled and went to work on her talker and said  “mom you are pretty.” We both started laughing.   She has definitely learned how to use language to get what she wants, and in this case, flattery will get her everywhere.  At least as far as the mall.

  

Language is Power

A friend  proudly posted on her facebook wall about her son’s first word.  He said “bye bye.” They tested him several times to see if he would do it again and indeed he did. That is a momentous thing. It is the start of one exercising control over what happens to them. There is a reason so many toddlers are adept at the word “NO!” They finally have a say in what they do, eat, wear, etc, because language is power.

We learn to talk and we learn to listen. We learn through language eventually figuring out how to read and write, thus conveying language in additional forms. Language is the basis of all our interaction with one another and it comes in all forms.  I cannot even guess how many spoken languages there are (or were); and yet many of us are limited to just one. The deaf, who cannot hear spoken language, learned to communicate through sign, which is one of the few international languages.

Language is just one of those things you take for granted, at least until you cannot understand someone.  Of all the disabilities and medical problems Maggie has, her inability to speak is the most difficult for me. If I could magically fix it all I would do so, but if the magic extended to fix only one thing, it would be language. She might have a different opinion on this matter, but she can’t tell me what it is, so I don’t  know.  And that’s the problem.

Before she had the trach, Maggie did say an occasional word. Her favorite was “mama” and she would say that in various tones and at various decibels to convey what she wanted. She would call me, chastise me, greet me, correct me and laugh at me all with one word.  It was hilarious. The tracheostomy tube silenced that along with her joyful laugh. I miss both terribly.  But it could not keep her from communicating

Language is just one form of communication, though, and Maggie can communicate even if she cannot speak. Communication is necessarily a two way street, it requires  a sender and a receiver.  If there’s no one to receive what you are saying, there is no communication.  Maggie is an excellent receiver. She understands everything. Everything.  In fact, if she gets any better at “speaking” I may be in serious trouble. She knows all my secrets.

Maggie does “speak” somewhat. I’ve written at length about her amazing abilities with her dynavox. She is getting more and more adept at using that every day. It is not a perfect set up, but it is a wondrous thing. The machine itself presents some limitations  and Maggie’s  ability to utilize the incredible things it does have to offer limits her even more.  The biggest limitation to it, though, is that others don’t really accept it as actual communication yet. Those who recognize the machine are amazed at her abilities, but don’t really “listen” to what Maggie has to say. The technology is still off putting for many. That will change over time as more and more people get access to this technology, but for now it is another  roadblock to capturing all the power that language has to offer. The technology  is unbelievable and it has provided Maggie  with some of the power of language.  The taste of that power, limited though it may be for Maggie, just makes her hungry for more.

I can only imagine what Maggie would have to say if she could tell me what she is thinking. Think about it. She's 17 and I have been her mouthpiece her entire life. There is an outside chance I have read her wrong once or twice. If she could call me on a lifetime of errors, I might just get an earful. 

If only.

Short, sweet and to the point.

Still here. Running as fast as I can on the hamster wheel but not getting anywhere.


I have been working on an article that will be published in a magazine in December and it's taking a lot of my time. They want me to tell Maggie's story, what she is like, what it's like to raise her, the costs, financially, emotionally and socially etc. That's not a problem for me. Conveying her story in the allotted space is quite difficult, however. It should be about the length of this post - but to date I have written 643 posts describing those things. How do I get in all in one piece. When it is cut down to the right length, it feels sterile. When I add my style it is too long. Oh well, I will get there. 


I have not met the editor of this magazine. She and I have engaged in a lovely correspondence back and forth as the various drafts are sent. I realized the I might not be getting all the needed description of Maggie when, on about our 4th exchange she suggested I put in a quote from Maggie or a conversation the two of us have had and ended her note with  "the more I read the piece, the more I wanted to hear Maggie's voice too. " 


I looked at those words for a long time. 


How had I failed to convey that Maggie was non-verbal. How had I omitted this in all the correspondence we exchanged. I thought about what to say in return because I didn't want her to feel badly, this was my omission. I figured, the best way was to just say it outright. 


 "...it's interesting that you want to hear Maggie's voice....So do I. She is non verbal, but that is not the same as non communicative. " I went on to explain the dynavox, hand signals, facial expressions and the telepathy or whatever it is that is the basis of the communication between Maggie and me.  


Now she want to hear more about that, but it already needs to be shorter. By half. 


I have to get my shears and get back to work.

Maggie the Magnificient

For those of you just tuning in, let me get you up to speed.

I have an amazing daughter.

Last night Maggie and I were home alone folding laundry and watching 60 minutes. Maggie hates television. She cannot see well enough to enjoy it and worst of all, when we are watching it that means we are NOT paying attention to her. This, of course is unacceptable.  She said what she always does.  “Mom, I don’t like TV.”  And I respond the way I always do , “too bad, I do and I’m watching this.”  That cracks her up so she does it over and over again and I give the same response. It’s a never ending game.

After about seven or eight rounds of this game, my friend Lori called me. She could not find CNN on the TV. Her teenage daughter told her something was up and they were trying to tune in to see what was going on. I told her it was channel 56 and turned it on myself. Wolf Blitzer was dancing around the announcement about Osama Bin Laden but not saying what was happening.  Presumably they were waiting for confirmation.  I had no idea what they were about to say, but the build up was huge. I called Steve at his friend’s house to tell them to turn on the news. Even though it was clearly something big,  my jaw dropped when they announced the news.  I stopped folding laundry and stared at the television completely ignoring Maggie.

I can safely say that Maggie does not have any understanding of Osama Bin Laden or breaking news or any such thing, (and I envy that a little).  But somehow she picked up on the gravity of what was going on. I talked to a couple of people on the phone and kept watching the television. Maggie sat there quietly until she started hitting her talker. I thought we would be back to the “I don’t like TV” statement, but that was not what she had to say. She worked clicking and moving until she said: “Dad, come see the TV.”

My jaw dropped again. My girl knew that this was something big and she figured her dad would want to know what was happening.   

She amazes me.  That is all.

Hello, Central?

Despite all the high tech ways we have to communicate, you have to admire the old PBX system. Everything went through one central switchboard. The operator of that switchboard would connect people with the appropriate person or department.  That switchboard operator had a good understanding of who was talking to who and what was going on with everyone. Historically there was a central switchboard for a community. In small towns, that operator knew everything that was going on around town. (Think Andy Griffith)

Obviously we have evolved tremendously since then, and communication is much more sophisticated; but in some cases, the concept still applies. One of those cases is mine. I am the switchboard operator for Maggie. I connect Maggie with all the right people at the right time. We need all those people out there and they all have important thing to bring to the table, but they have to go through the switchboard or their assistance is of limited value.

There are those who think the central information controller is not important. That knocks the entire fragile system out of balance. They fail to realize that they are one of many celestial bodies in Maggie’s solar system. Maggie is the Sun throwing out all this energy and heat with many bodies orbiting around her. It only works if everyone stays in orbit. However, it's not gravity that holds everything in place, it's communication.Communication is the only way we can keep everything spinning around Maggie’s sun.

Maggie is a very complicated girl. She has doctors coming out her ears. She has nurses coming out her ears. She has therapist s coming out her ears. She also has teachers, case managers of every flavor and   other professionals in her life. All of those professionals have staff and assistants and interns and others who have a more tangential role in Maggie’s life. In addition to that there are medical suppliers, their delivery personnel, the insurance, the state of California, the service providers ete etc etc.  Maggie needs an operator, someone to coordinate all lines coming in so that she can take advantage of the amazing help that these professionals want to give.  I am her operator and believe I am quite good at keeping all the lines open all the time.  It is an important role and one that deserves some respect.

I have had moments of failure in this role, but for the most part I am what is known in the legal world and PMK – person most knowledgeable. You want information.  I probably have it and, if not, I can certainly connect you to someone who does.  Do you want to skip the operator? Sorry. No can do. The operator alone knows all.  

You will find yourself disconnected. 

Is This the Party to Whom I am Speaking?

The headline in the San Francisco Chronicle  today said “Summer is here, don’t blink. ” Very accurate reporting.  Summer arrived in San Francisco yesterday and it is supposed to last until tomorrow.  It is wonderful to see some blue sky and wear shorts, even if only for a couple of days! The world doesn’t need to see me in shorts any longer than that anyway.

I sported my shorts on an errand to the Hall of Justice yesterday. Tim was having trouble getting his traffic  school certificate accepted electronically, because, it turns out, we forgot to pay the fee that goes with it.  Mom to the rescue. Since I was going anyway, and he was nice enough to give me a ride down there, Steve asked me to get a court date for his recent ticket. (Scofflaws! All of them!)

I  told the guy at the window that I had two separate things to deal with, one for my son and one for my husband. He gave me a quizzical look. I told him they should all try to drive like me, but he didn’t seem interested. As he looked over Steve’s ticket he said, “You can’t do this for your husband. He has to come in himself or have a lawyer represent him.”  “Well,” I responded “I AM a lawyer”. He looked at my something less than professional garb and asked to see my bar card. I gave him a business card, but he didn’t look convinced. I gave him my bar number and I’m not sure if he looked me up or what, but then I was good to go.

Everything fixed, I left the Hall of Justice to find a bus home. I walked about 5 (long) blocks up 6^th Street toward Market St. Anyone familiar with San Francisco knows this is a less than desirable place for a stroll. It is (what was once known as) skid row. I just kept moving and realized when I got to Market St. I had to go further to catch one of the many busses that come into my neighborhood. Now I was well into the Tenderloin. 

If the  6^th street corridor is skid row, the Tenderloin is skid central.

I felt very conspicuous in my shorts and polka dot bag. I didn’t look like a lawyer in the Hall of Justice and I didn’t look like a bum on the corner of Junes and Turk Sts.  I just didn’t fit in anywhere.! I waited for the bus as a clearly mentally ill/drugged out woman SCREAMED at her companion.  It was lovely.

Once on the bus everything was calmer. The crazy lady decided not to board with her friend, which was fine with me. My phone rang . It was Janice, Maggie’s school nurse. She had already called once. Maggie is a bit “off” for lack of a better word. She’s not sick, but something may be brewing. When she called the second time, I became a bit concerned. However, it turned out Maggie just wanted to talk to me.

When Maggie “talks” to me on the phone, she just wants to hear my voice. She generally doesn’t use her talker in return, she just listens and responds using her  signs for “yes” and “no” as though I can see her.  I speak to her in the normal cadence of a conversation, saying something and then waiting for a response. Of course, I hear only silence, but she needs time to process whatever I say. We just “spoke” for a few minutes and then I said put Janice back on the phone.  Much to my surprise, she did. When Janice said hello, I said excitedly , “did she let you know to take the phone?” Janice said, “no, I could hear you. “  I laughed.

Of course there is zero privacy on a public bus and the man next to me was clearly curious about my phone call. I thought to myself, Boy, if he only knew there was no one responding to me, he would have thought I was the crazy woman.

Oh wait….

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.

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.

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?

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.

Sorry, can't make it

Maggie missed a party on Saturday. I feel terrible, but it is just one of those things. Maggie had been ill, but she was well enough to go for a while. It was a reunion of sorts hosted at the house of one of her former and future classmates. Her buddy A is a year older than Maggie is and started high school this year. Maggie will join him next year. Maggie and A have been in the same program for their entire lives, two separate infant programs, preschool, elementary, middle school and next year high school. Other than those years that A went to the next level ahead of Maggie, they have been together. A has a body like Maggie’s that does not work for him at all. Really, there just are not too many folks who are as thoroughly involved as these kids. Those of us with kids around the same age all know each other and help each other out when we can.
We were looking forward to going. A’s house is really designed around his wheelchair, so it is one of the few places we can go easily. On Saturday morning I received a call from A’s sister advising that another individual had sort of invited herself and they did not want us to be uncomfortable. This sounds like I’m the one in middle school, but I knew I could not go if SHE was going to be there. I started spewing out excuses.
This all stems from an ugly incident that happened last spring. SHE was a teacher’s aide in Maggie’s class. She is nice enough, but she's a rather goofy woman. She is a mom herself and her kids attended the same school.
For reasons known only to HER, SHE HIT MAGGIE! On purpose.
She “smacked” her, apparently because Maggie was not behaving while they were changing her diaper. [Side note, Maggie’s behavior can be frustrating]. Please remember that Maggie cannot walk, sit or stand. She is completely dependent on others to do everything for her. In addition, when they screw up, Maggie cannot talk to tell anyone what has happened. As it turns out, Maggie did not have to tell anyone.
When this happened, the nurse was present but because her back was turned, she did not see anything. She heard the slap and her antenna went up, but she proceeded with the diaper change. The nurse was still trying to figure out what to do as the returned to the classroom, when SHE spoke up herself. The woman (perpetrator) announced it to the teacher when she returned to the room. “Maggie wasn’t behaving and I had to give her a good smack.”
Everyone in that room is a mandatory reporter, the nurse, the teacher, the other aides, everyone. They are obligated by law to report any incident of abuse or suspected abuse. The teacher went straight to the principal. One would think that protocols are in place to protect the child, the accused and everyone else. If they are in place, they failed miserably. The principal admonished the teacher not to tell the family and that he would handle it. He did nothing. The woman returned to the classroom to work with non-verbal children who are totally dependent on the adults in the room for everything.
That means Maggie came home from school that day and no one told me anything. The nurse, who rides the bus with Maggie, did not mention a thing. There was no physical evidence that I ever saw. Maggie was subdued, but I attributed that to overall health issues. When I should have been comforting Maggie I was joking around and telling her to cheer up. When I realized that, I felt terribly guilty. She should be able to count on her mom when the other adults in her life scare her like that.
When SHE (the perp) returned to the classroom the next day, the teacher was very upset. It was apparent that nothing was going to be done. He called me. In all honesty, my first thought was “don’t make waves”. Why? I do not know. However, it did not last long. The betrayal was so complete that it took awhile to process all of it.
There was no question this happened. The woman herself admitted it repeatedly. Not only did she do it, she did not think it was wrong, notwithstanding the laws against it. I did not want her anywhere near Maggie
I contacted the principal, who said all the right things, but did nothing. I told him it was not safe to have her around children at all, but particularly not around non-verbal children who cannot protect themselves. The woman was still in the classroom; and, now she was very angry with the teacher and with me for “turning on her.” SHE was the victim. Now I really wanted her away from Maggie.
The principal stopped returning my calls or emails. Nice. I emailed some folks higher up in the district. Eventually the woman was placed on (paid) administrative leave and finally reassigned to another classroom. Of course, that meant that Maggie’s teacher had one less aide in the classroom. Essentially he and the children received the short end of the stick on that one.
This all happened last spring. The woman is working at another school. My concerns were never formally addressed, but I did not need that. I just needed to know Maggie was safe and I could not feel that with her around. Once the new school year started and she was really gone, I put it out of my mind. In fact, I had not thought of her or that incident in months until I received that phone call Saturday morning. I am ready to keep it behind us, but a “reunion” is not something I am interested in.
I learned today that SHE did not come to the party after all. Maggie missed it for no reason. It does not really matter, but it makes me sad and a little angry that this woman still has any control over me and my daughter.

Communication

Humans have a basic need for communication. And the term communication is not limited to speech, it includes everything; Speech is only one of several methods communicating. We all have a “voice” but it takes many forms. It can be oratory, prayer, longing looks across a room and even blogging. However accomplished, we fill our need to connect with other people, with animals, or with God.

Maggie has never had speech – she is non verbal. I was asked recently how Maggie learned to communicate. The question sort of stumped me, because Maggie could communicate with me from the moment she was born. That's true with many parents and children. At first it was with her eyes, then a combination of her eyes and her facial expressions. Sign language in the universally accepted way was not an option, her cerebral palsy prevented the complicated motor function required for ASL. Eventually she learned her own sign for yes and no that became very reliable. Hand up to her mouth for yes and hand down on her leg or the tray of her wheelchair for no. At times, the “no” would be so emphatic, she would pound her fist on the tray and one of her brothers would tell her to stop “shouting”. That always made her laugh.

Even though she could not talk, Maggie still had her voice. And I’m not speaking metaphorically here. She used to yell her head off to get attention. And it worked. Especially in church. After several years, She had one word – MAMA. She would whisper it, yell it, change the intonation in her voice so she could sound mad, excited, happy etc. In March 2007 Maggie had to have her tracheostomy tube put in place. That eliminated any sound, including her one word. I miss that.

Losing her audible voice did not stop Maggie from communicating, however, now she kicks the side of the bed if someone dares to leave her alone for a moment. She pulls on tubes, which she knows will bring us running. She gets what she wants. (S P O I L E D). And she still has the other methods she’s always had. Maggie’s smile is a very useful communication tool. She engages people with that smile. She also manipulates them with it. She has a great future as a con artist.

But for all of her 14.5 years, Maggie has been working with communication and now has become fairly proficient at a complicated communication device. Think Stephen Hawking, the physicist. Ok, she is not talking about black holes or anything, but she can maneuver a combination of switches to operate her dynavox. It speaks aloud the words or sentences she chooses. She tells jokes, calls me, asks dad to read stories, calls me, makes sentences about her brothers (generally she says they’re stinky), tells her nurse to “come here”, calls the dog, calls me, asks questions, tells me what to do, and shares the news of her school day when she get home.

A lot of the time she is using it for entertainment, saying things like “Mom is Tuesday” but generally she is communicating, connecting. Even if an individual is not familiar with the machine it takes only a moment for them to say, what is that. Is she talking to me? And when someone answers – wow! It sends Maggie into orbit. She can say Mom come here five times in a row. And when I march up to her and say “WHAT?” five times in a row, she laughs her head off. She uses the device not only to communicate her physical needs or to converse, she uses it to connect with others around her. Good for her. Good for us.