Super bowl communication

The Super Bowl was just sad. I didn't really have any skin in the game - I was supposed to hate Seattle because they beat the 49ers, but I just didn't care. I thought even the ads were pretty "meh" with the exception of the pistachio ad by Steven Colbert.

That is until the Microsoft ad.

As you might imagine, this one really caught me. I was a little teary and so so so proud that Maggie's method of communication was featured in a Super bowl ad. We are becoming mainstream!

 I have to agree Technology, for all it's faults and glitches, has improved our life tremendously. Except that  my daughter manages to nag me incessantly with her talker. I mean if I'm just a little late with her food, she starts acting like she has never been fed in her life.

If you can't hear it, she says Mom i want my dinner please, I'm hungry, I'm thirsty, I want to drink some water.

High tech nagging is so much cooler, isn't it.

Just Say NO

My friend Sharon gave me a little present the other day. It is a pre-programmed button that says NO. In fact it says NO about ten different way.

No!

NO NO NO!

Did you hear me? I said NO!

It's hilarious and probably something everyone should have handy. Mom can I take the car? NO NO NO! Another volunteer opportunity? NO WAY! solicitors at the door or on the phone. "Did you hear me? I said no." Aren't you making dinner? Absolutely NOT.

In this house I could think of a certain someone who will really make excellent use of it. Maggie has a very clear sign for no. She just slams her hand down on her tray. She does it so hard there is a lump on her wrist where she hits.  This button gives her some options and intonation. She can't be sure which "NO" will come up, but it doesn't matter because they are all pretty funny.

She was practicing last night and could not stop laughing.

I have never seen Maggie adapt to something so quickly. I showed her once and she was clamoring to have that thing on her tray. This is a powerful little tool for her. Her favorite line is "Absolutely not" but every single one of them made her laugh. 

Sharon tells me there is also a "yes" and a "maybe" button. Maggie doesn't really have a way to say maybe so that might be worth a try, but what's funny about maybe? Besides, her tray will get a little crowded with all these options. Obviously her dynavox has yes no and maybe on them, but Maggie needs something quicker and with more intonation. 

If there's only room for one, I think Maggie has made her choice. 

 JUST SAY NO!

  

Maggie and I went shopping on Saturday, as we are wont to do. I am currently boycotting Stonestown mall because of an incident a few weeks ago involving a broken elevator and a security guard who found our predicament amusing. I wrote about that here and sent them a fax describing the situation, but not even the courtesy of a reply. We will go back, eventually, but I need to be completely over it first.

Maggie kept saying on her talker "Mom I go to the mall" and I would say,"well no, we are going to go downtown. No mall Macy's for us, Mag, - we are talking 9 floors of fun!" She switched gears and tried to make a sentence that said we are going downtown, but she could not make it happen. She kept saying "Mom we are going down" and I would say "right, downtown. Do you want me to help you spell town?" She slammed her fist down which is her response for NO! She kept trying. I kept offering and she kept rejecting me. Finally I said, "you know down and town rhyme." That seemed to make it click for her.  She cleared her sentence and went back to work. My husband entered the room and she made this sentence:
y

"Dad I will go to down down Dad"

I cracked up and said Way to go Maggie. That's close enough. She was very proud. Steve was a bit perplexed for a minute, but then he got it. From here forward, we will likely refer to it as Downdown"

As we shop - or do anything -  Maggie and i keep up a running commentary. She says "Mom. can I say something please," and i say "Please do" as we peruse the goods at Macys'. Then it becomes, "Mom I want to listen to music." and I say, "there's Music playing in the store, can you hear it.?" (makes sign for) Yes. "Do you like it?" NO! Usually it's "MOM MOM MOM MOM" and I say "what what what what?" This type of banter is non stop. Others look at us quizzically, but generally smile and move on. Once in a while I get "That is amazing" and I smile and say, "Isn't it? She's smart as a whip"

Perhaps because that is the norm, I was more than taken aback by a woman who chided me for not paying attention to Maggie. I was paying for some purchases and Maggie was saying MOM MOM MOM MOM. A woman was suddenly next to me saying, "Hey, She needs you. She is trying to get your attention." I glanced at Maggie and back at this very angry woman and said calmly, "I'm on it, thanks.  She was not to be deterred. She said, SHE NEEDS SOMETHING. I looked at Maggie again who was happy as a lark but a bit wary of this strange encounter, and said evenly but a little icily, "she's fine, Thank you."  This woman just GLARED at me and then looked over at a cop who was a few feet away. This cop had opened the door for us and we exchanged pleasantries when I entered. I thought. Go ahead, Lady. Make my day. I just looked at her disapproving face and said "You really just need to mind your own business, you have no idea what's happening here." She huffed and started to walk away. 

I finished my purchase and looked at Maggie. THe lady had frightened her a little bit because she was so angry. When she heard me tell her to mind her own business, Maggie started laughing her head off. The cop, who didn't seem to notice the exchange said, "Wow, she sure is happy isn't she." 

I smiled sweetly and said, She certainly is. Maggie laughed again.

And the cop opened the door so we could leave.
 

Cinderella's going to the BALL!

Tonight is the PROM!!

Maggie is very excited. She has been putting it on her talker and could not sleep a wink last night. It is so sweet.

As in other years, I will accompany Maggie to this ball. Sadly, though I will be unable to dance with her. I broke my foot the other day and I am on the disabled list.

If we run out of the ball at midnight and Prince Charming finds THIS shoe, I doubt he'll come looking for me.

Prom pics to follow!

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

Get yer International Woman right HERE

How handy that today is International Women's day and we have our very own International woman right here under our own roof. Our friend Emily has been staying with us this week. She lives in Warsaw Poland but she's in San Francisco for a seminar and she's staying with us.

Emily was Maggie's teacher in grades 3 through 5. That was her first job out of college. Starting your career with Maggie in your class! Yowsa! She left San Francisco for a job in the International school in Warsaw nearly 5 years ago. She's been back to visit San Francisco since then and usually stays with us. Maggie and Emily have a special bond.

Actually, all of us and Emily have a special bond.

What a week Ms Maggie has had. It started with Emily's arrival, included her birthday and Emily even did her nails.

 Maggie is glamorous and quite taken with herself. I'm not sure what next week holds, but it will be hard to top this one. That is for sure.

Last night the two of them were really causing trouble. Emily offered to do Maggie's "news" on her talker That was hilarious for a bunch of reasons. First of all Emily did a very long post, including phonetic spelling of some Polish words, and then accidentally cleared it before saving it. I videotaped her anguish which was hilarious.  I will just share a still because this is a family friendly blog! (but do surf my youtube channel) Suffice it to say it is beyond frustrating when that happens.

Emily figured at Maggie's age there should be some cuss words on the device. I said no because if they were on there, Maggie would press those buttons all day long. She figured if it was just in the news a bit that couldn't hurt. Maggie loved it. Here they are playing it back for the first time. 

How will I keep her down on the farm now?

Emily leaves tomorrow and it will be hard to see her go because it will probably be another year before we see her again. We can't wait until next International Women's Day.

Supporting communication

Maggie communicates with her Dynavox Maestro, a communication device that she operates using a two switch system. The two switches work sort of like a computer mouse. She moves through the screen with one switch and when she gets where she wants she uses the other switch to select. It's quite amazing to watch her, she can fly through the pages when she really gets going.

Maggie's abilities on the Dynavox are the result of years of hard work by numerous therapists and teachers. Professionals recognized her intellect and abilities early and started the building blocks long before I understood where it was all heading. Maggie is smart and motivated to communicate, and she had excellent instruction and support. All of that is necessary.

In addition we need the practical pieces of the puzzle or she cannot use the device. In order for Maggie to work her magic, she needs the dynavox itself to be charged and in good working order, the tray with the two switches on it so she can navigate through the pages and the pole which attaches to the chair and mounts to the dynavox.  . With all the pieces she can take her dynavox anywhere and have her say. It should look like this:

When she arrived home from school on Friday she did not have the pole. Arrrgh. We were looking at an entire weekend of little or no communication which is very frustrating for her and by extension, for all of us. I will say, though, that of the three needed components, forgetting the pole is the easiest to work around. Without the device, forget it. Without the tray, she can't maneuver around the device, but we can and did MacGyver something for the pole.

We put Maggie at the dining room table and put the dynavox there. It's not perfect because the talker cannot come with her, but ti's better than nothing. We have to prop up the dynavox so she can see it. The design of the dynavox is frustratingly flawed, though, as it does not stand up by itself. (The "stand" is part of the case, but you can't use the case if there is a mount on the device for a wheelchair - it's like they forgot the users are sitting in wheelchairs). First I balanced the dynavox against a pillow. Not perfect. Not terribly steady, but serviceable. Of course the angle" wasn't right and she couldn't really see what she was doing. Maggie depends mostly on sound because of her vision, but she does look at the screen and it was bugging her that she couldn't see it right..

Steve came home and messed with it and when I looked the dynavox was sitting perfectly upright and steady. Maggie's face looked like she wasn't buying it.

Thank GOD for Giant Wine bottles! I believe that is called a jeroboam and holds (or held) the equivalent of four bottles of wine. And one dynavox.

Better, but she was still stuck at the dining room table. She couldn't use her talker in the bedroom or in the front room or anywhere else.


Steve disappeared into the basement - his workshop, his sanctuary. He can build just about anything and is at work on Maggie's Halloween get up now. After a while I asked what he was doing and he said  I'm making a new pole for Maggie. I wondered what it would be. The possibilities were endless. Steve saves every thing in that shop - every scrap of wood, old toy wheels, even broomsticks, because they make good dowels. Forget the dowels, it turns out broomsticks also make excellent poles to hold a dynavox.  He made it the right size to slip into the mount on the side of the wheelchair and used a screw to hand the dynavox from the broomstick. Maggie could now communicate on the move - but we had to move very slowly because it was held up by only one screw and it is an expensive thing to drop. (We didn't drop it).

Steve (visible in the background wearing his Giants hat) feels justified in his broomstick hoarding now. However, one broomstick to the rescue every 26+ years does not justify the pile we have down there. I admire his ingenuity, but it is my duty to keep up the nagging.

Maggie might have something else to say about that, though.

Maggie weighs in

Despite the world circumstances that have hit us so personally and so hard, we have to marshall on. we have to get things done and Maggie still needs our full attention. We can't lose ourselves in this because Maggie still needs to be lifted, suctioned, fed, etc etc. It's good, though. She keeps us grounded.

Maggie cannot understand what happened, though she fully understands that we are upset and that dad is on TV. She even refrained from her standard statement, "I don't like TV" when her dad is on the screen.

Last night just as the nurse left, Maggie was sitting in the living room with me. Steve was behind her in the dining room on the computer. She said, on her talker Dad? Dad? Dad? He absentmindedly answered "Yes Maggie I'm right here."  Satisfied, she hit her "news from school" button and this is what she said.

Listen closely.

If you could not hear it, I took a picture of the screen too and you can read it for yourself

She waited to get his attention and then gave him her message. I was only half listening but found myself sitting at attention before she was done. Often Maggie's talker is just going on the the background and we don't catch things the first time around. I leaned forward to see if Steve had heard it. He heard it loud and clear. He was just sitting at the table smiling sort of sadly. He was very touched and told her so. She was very proud of herself and said it again and again. 

Obviously, Maggie did not enter that message. One of the adults int he class did it, but Maggie knew that she had a special message for her dad and delivered it perfectly. 

Yeah, she keeps us grounded and makes our hearts soar.

Back to school DO

Maggie has been looking quite shaggy lately and that means it is time for a haircut. She returns to school on the 20th so today we got her "Back to School DO" from her favorite Beautician, Lisa at Tony's Hair Studio.

Maggie loves to get her haircut. She loves going to the salon and getting the cover put over her. She thinks the actual cutting is hilarious, but really not nearly as funny as the hairdryer. I told her yesterday the we were heading to North Beach for a hair cut today and the moment I saw her this morning she was touching her hair and saying "Mom i want to go" on her dynavox.

I was looking at me email on the phone. The nurse hadn't even left yet and, more importantly, I had not yet had any coffee. She started with that "Mom I want to go" sentence over and over and I finally said "Go WHERE?"  She pulled on her hair but I told her I wanted to hear it. There is not "haircut button on her dynavox (but I should make one.) She started hitting buttons and I knew she was going to ask for help to spell the word.

 I turned on the video camera on the phone to catch it. It took a full 3.5 minutes to spell out Beauty Salon, but she did it.  It's slow, but kind of cool. (Don't feel like you have to watch the entire thing unless you want a spelling test.) Once she gets going she picks up steam.

It was difficult for Maggie to wait until noon for her appointment, but somehow she made it. And she enjoyed it just as much as always. It's nice to see her eyes again.

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.

Eddie's Birthday!

My first born is 24 today. I'm not sure how that happened. I could wax poetic about all the things he did as a baby, which seems like five minutes ago. Because he IS 24, I will show some respect and keep those stories to myself.

He is celebrating(?) his birthday on the road. He is somewhere between Las Vegas and Colorado where he is headed for another work event. Not much fun, but that's the downside of getting older. Your birthday is just a regular day. Well, Eddie, I can tell you it is definitely not a regular day to me. (*wipes away motherly tear*). Happy Birthday!

Saturday we drove down to Monterey to see him at the Sea Otter Classic, where he was working over the weekend.  Maggie stayed here with the nurse while Steve and I did a quick nine hour jaunt to take him out to dinner. I brought a birthday cake which Maggie helped me bake.

When Maggie helps in the kitchen she is usually throwing pots out of the drawer or saying over and over again, "mom, I cook."  This time I gave her a task. I told her Eddie's birthday was Tuesday and she needed to say Happy Birthday to him on her dynavox. I wasn't sure if she could do that but when I realized she was starting, I turned on the video on my phone.  It took her a minute but she got it done. Watch.

She never ceases to amaze me. 

We put that on Eddie's facebook first thing, so Maggie could be the first one to wish him a Happy Birthday. I told her that it was three days early, but she didn't care. When Maggie wants something you just do it. Life is so much easier that way. Teenage girl runs the house - not earthshaking news at all. 

We frosted the cake and I tried to get a picture with the cake on Maggie's wheelchair tray, but that cake would have had a giant hand print in it and she would have had an allergic reaction, so we opted to keep in on the counter where both she and the cake were safe.

That cake traveled from here to Monterey, California,  from Monterey to Las Vegas, Nevada and is now en route to Colorado. I do believe it's my first interstate dessert.

Happy Birthday Eduardo!

No Place Like Home

A frustrating morning is turning out alright.

Steve needed to bring his car to the dealer for some recall item. I laughed when I heard him make arrangements to drop it off at 7:00AM on Saturday. He's not really an early morning guy. But it made sense. He needs the car all week and dropping it off early Saturday insures it will be done today. Still 7:00AM is early for him, especially when he arrives after 11:00PM from an overnight trip to court in a distant county.

I thought what the heck, we'll make an adventure out of it. Maggie and I would pick him up at the dealer and the three of us could go out to breakfast. At 6:55 AM I had to yell at him to get out of bed and get the car down there. Maggie and I left about 15 minutes after he did and picked him up. At the last moment I took pity on the dog and invited him along. That was a tactical error because it further limited our options.  Now we needed to find a place to eat outside so the dog wouldn't freak out. But it was a little cold, so the outside patio had to be in the sunshine for Maggie and for us.

We wandered about, but many places like that cater more to the Brunch set and weren't even opened yet. We headed down by AT&T Park, because its Giants opening weekend and everything is in celebration mode. Not really many breakfast places down there - but lots of taverns. Didn't seem right for us. Maggie started coughing and as we turned to suction her, I realized I forgot the suction machine. We had to rush home. (It was just too early for me too)
 
We dropped off the dog and started out again, this time in our neighborhood. The neighborhood places are small and don't really fit Maggie's chair. I'm not making an ADA statement here. She would sort of fit and no one would turn us away, but it's not very comfortable.  Steve suggested another neighborhood across town and I said No. I'm not driving any place else. I was irked. Something as simple as breakfast out was too complicated for us.

This stuff gets old.

We gave up, went to Safeway, bough some eggs and came home. Of course I dropped the bag of groceries and lost three eggs in the crash which only added to my frustration.

When we arrived, our back deck was bathed in sunlight and protected from the cool breeze. I made scrambled eggs and toast and we found exactly what we were looking for. Dorothy was right. After all of our searching, it turns out there really is no place like home.

Maggie enjoyed that but she was ready to move on to the next adventure. She didn't have much fun riding around town in the dawn's early light either. She just worked her Dynavox until she assured Steve they needed to head to the park. They took the dog leaving me a few minutes of peace.

I'm going back out to the deck with the paper. 

March Madness

No, not basketball: equipment.

This month has been a giant fail for Maggie's various equipment needs. Some of that is my fault, some bad luck some design problems and some chronic failures. No matter what the reason, the problems have been annoying and inconvenient to say the least.

 On March 1, I cracked up the van which is an extremely important piece of equipment for Maggie. That was in the shop all  last week and we were car less. But they did get it back to me last Friday afternoon which was twice as fast as the other place would have had it. It was expensive to fix, but I have insurance and my outlay was limited to my deductible.  It is shiny and new looking and I'm really looking when I merge so I can keep it that way.

But the car was only the beginning. Even thought the car was back Friday, in time for Spring Break, we were only able to use it on Saturday for an outing. We haven't gone anywhere in it this week  because her wheelchair broke Sunday morning. Steve did an excellent job of stabilizing it temporarily, but it wasn't really safe enough to go in the car. Her physical therapist found some replacement tubing we could use. A repair guy from National Seating and Mobility CAME TO MY HOUSE yesterday and repaired it. That is excellent service. We can finally hit the road today.

In addition to our mobility woes, we have been dealing with Maggie's new dynavox, which arrived on March 6th and set up a few day later. The excitement of that was tapered by the glitchiness of the program and some design flaws that make it difficult to work with the wheelchair. Apparently there is a "fix" for the software problems but we just have to live with the design problems. You can imagine how pleased that makes me. I spent a week trying to get someone to acknowledge the problem - which they seem to think I was making up. I repeated the issue a dozen times saying it seems like it was not designed for someone in a wheelchair. After telling me it was my imagination and there was no problem, I hear, "Oh, this particular device  was designed for an ambulatory user". Uhhhhh. Isn't that the same thing as NOT being designed for someone in a wheelchair.  Once they "got it"  they basically said it's too bad for us. Man, for the amount of money they charge, you think they might be a bit more accommodating.

The lift system we have in the house has never worked right and while I can't attribute that to the month of March, it is another fail. I spent a few hundred bucks to fix it, and it only lasted a few weeks. I'm not sure what to do about that. I don't want to throw good money after bad, but I have to do something. It is getting more and more difficult to lift Maggie in and out of bed.

Now March is drawing to a close and the car and chair are working and we will get the software issue fixed for the dynavox and, because we don't have a choice, will learn to live with the other problems. The lift remains a conundrum, but it is on my list for April.

April is a month for Spring flowers and chirping birds.We can certainly deal with a busted lift.

Here are the lovely Spring Flowers I received last night for participating in a parent panel at UCSF. How can April not be better?

 

Maggie's New Voice

Someone pointed out to me that when I talked about the love/hate relationship with the trach, I left out the fact that it silenced Maggie's voice and her giggle. That definitely falls into the HATE category.

I find it amazing that someone had to point that out to me, though. For the first few years I couldn't stand it when Maggie laughed or cried and no sound came out. I guess, like everything else in our lives, that has become "normal." Her new laugh, though silent, is just as mirthful. Though I miss the sound I know she is happy and apparently that is now enough..

Of course Maggie's abilities with her dynavox have exploded in the past few years and her communication skills are better than ever. Five years ago, before she had the trach, she as still learning how to operate the device and we never heard the things we hear now. I don't think she was still learning to formulate a sentence. She started telling her jokes after she got the trach too. So much of Maggie comes through that dynavox that it is hard to even remember when she wasn't as well versed in communication. I still miss the sound of her voice, but she "talks" so much more now than she did then.

This week she is learning a new dynavox. After much study of the various options and months of waiting for reports, and then denials so we could get to proper approvals, her shiny new Dynavox Maestro arrived. With the help of Maggie's AAC specialist I was able to transfer the pages from her old device to the new one. There are glitches and things to be worked out, but this machine is very cool. Check out the two next to each other. The Maestro  is smaller and lighter than her old one and has a lot more capabilities.

There is a new "voice" on the Maestro which sounds a little like a techno-Marilyn Monroe, sort of breathless and flat at the same time. That's hilarious. For some reason the speaker sounds like it's blown but only when its performing some functions. On others it sounds fine. It's annoying, but fixable. Other glitches are equally annoying, but likely can be remedied fairly easily once we learn what we are doing.There will be a steep learning curve for a while. The dynavox rep told me I could hook it up to the internet and download fixes right to the machine. Right. I can barely figure out how to turn it on.

One criticism I have is that this very expensive machine does not have a case that works for a wheelchair user, and I would guess wheelchair users are a significant percentage of their customer base.  It does have a slick case sort of like an IPAD case, but if the case is on you cannot attach it to her wheelchair. Also the strap for the machine is on the bottom so you cannot hold it while attaching the machine to the pole. It is very difficult to mount it without dropping it. I have asked whether there is another way to protect the machine from both of these problems, but have not yet received a response. I'm hoping there is some easy fix to this stuff too.

Maggie will also have to learn the tricks of this new device, but I'm sure her success will be much faster than mine. This is her voice, after all.  

Relaxing at the Mall

As is the case nearly every weekend morning, Maggie used her dynavox to tell me she wanted to go to the mall. This "chatter" starts around 7:00AM when the nurse leaves and doesn't let up until we are in the car. That's around 10 because I find it's easier to hang out in the mall once it is actually OPEN to the public. 

For the first hour I tell Maggie its too early and she has to wait. Then I tell her all the things we have to do before we can go. (I have to take a shower, we have to feed you and cath you etc). That is her cue to start demanding things. "Mom go upstairs:" Mom I am hungry. Zbreakfast please etc etc. she thinks the faster these tasks are completed the faster we will get to her beloved mall.

You should understand, we do not buy anything at the mall, it's just a thing with her. 

At 10:00 we were in the car and by 10:15 we were in the elevator heading into the mall. she just kept saying "Mom I am happy" on her talker. She stopped saying that or anything shortly after our arrival at the mall. I looked down at her and by 10:30 she looked like this:

Once she gets what she wants, she can relax.

IEP Day

Today is Maggie's IEP  or Individual Education Plan meeting. It's an annual review of where a special education student stands and what the goals and objectives are for the next year. The meeting culminates in the written IEP, basically a contract on how a student's education plan will go for the next year. If done correctly, it is a helpful document for student, parents and educators alike.

 For some parents these meetings are a battle to get the items they want in the written plan. There is strategic maneuvering and planning beforehand and precision execution on the day of the meeting. This is necessitated when parents want more than the school district is willing to provide - sometimes because school districts are not doing what they are supposed to do and sometimes because parents are overreaching. Either way, it can be upsetting and difficult for all parties.

Maggie's IEP' have never been like that. Perhaps because her needs are so extreme, everyone is on the same page regarding Maggie's needs and abilities. It is a long meeting, usually about two hours, where all the different people who work with Maggie give their reports of her strengths and weaknesses. I am grateful and happy that all these professionals spend time with her and work together to help her achieve all she does. There are no surprises at the meeting because I keep myself in the loop all year long. I don't have any new issues to bring up and do not expect any major changes to her program. I expect this will be the all the other IEP meetings she has had, congenial and helpful.

Despite the love fest that Maggie's IEPs tend to be, they are difficult on me. Another year has gone by and though she improves educationally every year, she is in a different world and it is never more apparent than at these meetings.  We are measuring her but we are not using any measurement that is applicable in the normal world.

She is who she is and that's fine with me, but this is one of the few times I actually sit and think about other kids her age.  I sit there for two hours and listen to how wonderful my daughter is and I'm proud and happy; but while we focus on her accomplishments, I can't help but think about what she cannot accomplish. Most 18 year old students are not praised for their ability to make appropriate 4 word sentences on their communication device.

 Is it impressive? Hell yeah!

Does it hurt just a little? Definitely.







 .

Morning after

I am recovering from my birthday. Which was yesterday. Don't get me wrong. There was no raucous celebration. It is just another birthday and that alone is exhausting.

I received gifts, cards, calls. emails and Facebook greetings and was overwhelmed by all of it.The best was from Maggie, though. She got off the bus and gave me this card she made.

The picture symbols you see say "Happy Birthday Mom Love" These symbols are what she sees on her dynavox and are meant to direct her to the word she wants. I'm not sure Maggie uses the symbols as much as her hearing and memory. (She gets an audio cue too). But they do make the card perfect.  


The text is my favorite, though it says:  


Mom, Happy Birthday. I love you. thank you for everything you do for me. I feel loved because my mom help Maggie with everything. Love Maggie

This sticky note was on it too. telling me "these are her words"

They are wonderful words. 

It's almost worth getting older.

 Almost

Happy New Year

Gung Hay Fat Choy! It is Chinese New Year and it is the Year of the Dragon, which is the Big one. I learned over the weekend that it is very desirable to have a male child in the Year of the Dragon. Eddie's a Dragon, so I nailed that one!


Maggie was born in the Year of the Dog and I was born in the Year of the Monkey. As I was looking through various things about the Lunar Calendar and the various animals etc, I checked on the compatibility of the Dog and the Monkey. This is what I found: 


Dog and MONKEY 
Have underlying respect for each other. No clashes of wills. Good and workable relations in love and partnerships. Will cooperate well together. 


No wonder Maggie and I have such fun together.


We are going to spend Chinese New Year going to the Mall because that is what the dog is demanding. In fact as I write this she is saying "Mom go to upstairs and wear clothes Mom."


I guess I better sign off. I don't need a mad dog, that's for sure.


 (Oh, and lest you think I'm typing in the nude, forget it. I just need to change before we can go out.) 

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.

Mom, it's Friday, Mom

Maggie has an annoying habit of using her talker to repeat the same sentence 10,000 times. I believe she is waiting for a specific response and just keeps saying it until someone responds the way she wants. Generally we respond the first 50 times or so and then just tune it out. Steve can be reading the paper and Maggie will say "Dad, hello" over and over and over again. He says Hello Maggie, or Good morning Maggie or How are you today Maggie and she will just keep saying "DAD, Hello."

Maggie laughs her head off when I finally get exasperated and say, "Ok, Maggie you've said that enough. Clear it and start again." She does clear the sentence and start again,  but generally just changes the sentence a little bit. Dad, Hello dad might become "Dad, good morning." with an accompanying wicked grin.

When she came up with "Dad, go to work Dad" it quickly became a favorite morning comment.

There is a slight chance that she knows it drives us crazy and she gets a wee bit of enjoyment out of that.

Last night after the nurse left Maggie's sentence was, "Mom, tomorrow is Friday Mom."  I replied in various ways. "it certainly is" or "right you are." Nothing. I tried "yep, last day of school" and "you have to bring these gifts for your friends and teachers." "Vacation startes tomorrow." She just kept saying it over and over. I went back to wrapping and tried different answers about every third time she said "Mom, tomorrow is Friday Mom."

Steve was sitting in the other chair doing some work. He was right next to Maggie and hearing all of this but letting me respond because it was clear she was talking to me. Finally I said, "Hey dad, do you know what day tomorrow is?"  He didn't even look up but got the point. He said, "I'm not sure....Thursday?"

Maggie slammed her hand down on her tray which is her sign for NO! (and when she slams it like that it's more of a "oh HELL no.") Steve and I started to laugh and Maggie was a bit mad for a minute but even she finally started laughing. I still don't know what she wanted me to say in return, but it was good to turn the tables on her.

Still, I have a sneaking suspicion we will pay for that little trick tonight.