Language Cop

You know when you see this title and picture that I'm getting on my soapbox again. But this time I'll let others do the talking.


Last night Tim Shriver, CEO of the Special Olympics was on The Colbert Report stressing the importance  and humanity of eliminating the "R" Word from our language. I can't embed here, unfortunately, but I can give you the link. It's funny because Colbert is the perfect foil. There's a commercial first, I am sorry to say, but it's worth the wait!

 check out video here


Oh, and SPREAD THE WORD!

A break from Spring break

Maggie is off school this week. It is her spring break.We planned a fun outing at least once a day in the morning before the nurse arrived. We haven't done that well. We did go shopping on Monday, we went to grandpa's house on Saturday and had a trip to the park on Sunday. Monday was just one errand in the afternoon. Tuesday we did have fun doing some shopping for the opening of baseball season - including a walk around AT&T park in Maggie's panda hat.

 (For those of you NOT SF Giants fans 1) why not? and 2) "Panda" is 3rd baseman Pablo Sandoval's nickname.)

Today was supposed to be another trip to Fisherman's wharf. The weather is fantastic and we were going to hit the wharf early. But it was not to be.

Early was redefined.

Tim arrived home at 1:00AM and the nurse told him to wake me up to come and check on Maggie. She was needing increased oxygen. I hung out for a while evaluating and basically told the nurse to marshall on. Yes. It was concerning and I needed to check in with the doctor in the AM. The nurse may have wanted more, but Maggie just wasn't sick enough to justify a trip to the ER in the middle of the night. Basically they (read "I") would have monitored her all night and I had a private nurse to do that. I went back to bed and tossed and turned until 6:30.

In the morning, Maggie looked better. The nurse left and I was in charge. She was doing ok, but I had to report this. i called the nurse practitioner. The message said she was on vacation but the other NP would be checking messages and returning emergency calls. Were we an emergency? No, not at that point. I chatted with my sister on the phone and kept an eye on Maggie. By 10:30 she was looking pretty pale. I told her O2 sat and it was alarmingly low. I put the oxygen on and decided to page the pulmonologist. (First time I have used her direct pager since she gave it to me a couple of months ago.) I was hoping we could just get an order for a chest xray and whatever labs Maggie needed. Nope. We had to go through channels. She told us to go to urgent care.

Urgent care has punted Maggie to the ER too many times for my liking. They decide based on her description alone that Maggie has to go to the ER. Maggie is not sick enough to need the ER and it is a waste of time and money to go there. I called Dr. Aicardi, her private pediatrician. As usual, they were extremely accommodating and we could be seen there at 11:30. Perfect.

We were there for an hour. Maggie had (another) breathing treatment and her numbers improved dramatically. We took a prescription along with orders for blood work and a chest xray to use if she got worse instead of better.  It could go either way. We waited for the drugs for 45 minutes and then gave up and went home, arriving around 2:00PM. By 3:00 PM I talked to the doctor and they changed the antibiotic they had just ordered. I needed to go back to Walgreen's to get the new drug. ugh.

Tonight Maggie's numbers are a bit lower again. She is a little worse, but not terribly. Still, things are not gong in the right direction. It looks like our outing tomorrow will be to the lab for the blood work and xrays.

Too bad. We had much more enjoyable things planned.

Maggie and Sophie

The blogosphere is a funny place. You write your heart out and send the words off into the void not knowing who or even if anyone is reading. Then you get a comment here or an email there and you realize people are checking in and want to know what's happening in Maggie's World.

I see the sidebar listing places where I don't know a sole, but I know I have faithful readers in Thunder Bay, Ontario and Euless, Texas, to name just a couple of places. I read other peoples blogs too, mostly about other children who live with challenges like Maggie's - or different from Maggie's. Obviously I find a lot of similarly situated families and it's easy to connect on the internet.

 Sometimes you even develop friendship with this unseen readers, like I have with Elizabeth, who authors a lovely blog about many things including her 16 year old daughter Sophie. (check out her lovely blog here). We've never met face to face, but we have formed a connection. I told my sister in law that Elizabeth was re-opening her cake business (Heavenly Cakes) and Elizabeth made the cake for my brother's surprise party last week. I recommended her without hesitation even though I've never met her and never tasted anything she's baked. Sometimes you just know.

 We wonder if we can get our girls to meet someday, but the disabilities of each make that difficult to imagine. Still, we have decided Maggie and Sophie are friends. I don't know about Sophie, but Maggie is delighted to go along with that.

Especially when GIFTS arrive in the mail from this friend.

Maggie ripped open the pretty pink tissue paper to find two scarves from The Salty Dog Cafe on Hilton Head Island. Sophie lives in Los Angeles, but has her peeps shopping all over the country! Maggie was beside herself with the two scarves and doesn't really care if this friendship was invented by their moms. She thinks Sophie is A-OK

Thanks Sophie. Maggie couldn't decide which one to put on, so she thought she'd just hold both of them. They're blurry because she is shaking them, which is what she does when she's excited. Tell your mom thanks too.

Peeking around corners

Unfortunately snapping photos of children one doesn't know is frowned upon both by society and the mothers of said children.* I wish I could, though because the kids Maggie and I see when we are out and about are hilarious. The dynavox is the draw, of course. Most have seen kids in chairs before, but they haven't seen anyone talking like Maggie does.

The best are those between the ages of about 4 and maybe 9 years old. They have to be old enough to be cognizant of Maggie's differences, but not old enough to be annoying for staring. It varies.If they are too young Maggie is just ANOTHER new thing they are seeing and if they are old enough to know better than to stare at someone in public, it is annoying and I look at them disapprovingly. Of course they never see my carefully knitted brow because they are staring at Maggie. The middle ones - perfect.

Today we were in Borders book, which is a favorite destination. We can cruise all over the store and browse the books, cd's movies and other things. I will show Maggie our friend Grace Young's cookbooks, or the Junie B Jones collection (which she owns in its entirety.) Even though we have those book in our house, she find it hilarious to see them in the store. Of course the entire time we have a running commentary going. I am talking to her and she is answering on her dynavox.

There are children all over the place looking at the toys or calendars or the piles and piles of books. Maggie's Chair fits fine in there, but sometime getting around the displays is a bit tricky. I have to slow way down to navigate her chair. This is when I notice the kids most. They are holding an open book, but staring at Maggie. One kid saw me look at him and buried his head back in the book, only to lower it below his eyes. Another was looking through the shelves in a display case and a third glancing around a pole.  It was all I could do not to laugh. It is natural for them to be curious. If I meet their eye (which is rare) I say hello and tell them Maggie's name. Most are too shy to do anything.

Sometimes their mom/dad/whoever pulls them away to teach them not to stare. I can see the kid listening to the parent while keeping a watchful eye on Maggie. Other times there are older siblings trying to corral the younger ones. When i say something the older ones start asking questions. They are fascinated, know they shouldn't stare and use their younger sibling(s) to get themselves in a position to ask questions. I love those clever kids with the guts to speak up.

Ir's funny, but the same behavior from grownups or even older kids is not cute at all. It feels creepy. I don't know where that line is but I know when it's been crossed.  Until it's crossed, though, I think its delightful.

Just so you know, there's no harm in just saying hello. Even if you are over 9. Maggie would love the break from my incessant chattering I'm sure

* I did not take this picture, just found it on the internet. Some other stranger likely did it.

Sweet 16

Mr. David, one of the paraprofessionals in Maggie's classroom recently traveled to Austin, Texas  to participate in South by Southwest, the music extravaganza. He kindly brought back a gift for everyone in the class from someplace enroute to or from Austin. Very thoughtful and very generous.  Maggie got this shirt from Arizona.

The timing is perfect. Two of Maggie's cousins are University of Arizona folk, Pete already graduated and Leigh is a sophomore. Tonight Arizona faces Duke in the Sweet 16 round of the NCAA tournament. Maggie is all ready.  She has another cousin who went to UCONN and they are in this round too, but, alas, Connecticut is not between here and Austin. (Besides, they're playing San Diego State......who wouldn't love to see the mighty huskies fall to SDSU ... sorry Kevin)

Thanks Mr. David. And GO Wildcats!

Emmit's fix it shop

.Tomorrow is Maggie's the last day of school before Spring Break. The vacation is set for next week, but Friday is another furlough day in the San Francisco Unified School District. Furlough days for those of you who live in financially viable states, are days that have been cut because of budgetary problems. There are several this year. Teachers and staff are not paid, and students are not taught. It's a lose lose situation. But I digress.

When Maggie does not go to school it is up to me to entertain her. We go out somewhere every single day, even if it's only a shopping trip. She loves to go out and has a great time no matter what we do. When she's not out, she is using her dynavox to chat with everyone or to request what she wants. Her most frequent request if for me to play her music, which I happily do. That communication device is her life line.

And, just because she will be all mine to entertain, the device is acting up. Arrgh. It will be a loooong week without it. Maggie operates her dynavox by hitting two switches on her tray. The switches allow her to navigate around the device. Right now the receptors on the side where the switches plug in are very loose. The plugs won't stay in one place and the device won't respond when she hits her switch.

Hopefully Tammy,Maggie's AAC (adaptive and augmentative communication) guru, can work some magic tomorrow or even get us a loaner while this one is repaired. For now, however, we are using the low tech repair method - rubber bands. This very expensive machine is literally being help together (or at least the switches are being held on) with rubber bands.

I feel like Emmit from Mayberry RFD. He ran the local fix-it shop. Hmm, I wonder if he worked on communication devices.  Maybe we can stop by his shop for one of our outings next week. I better come up with something, that's for sure. We are going to have to find a whole new way to keep Maggie entertained.

Oh well, we will figure it out. After all, my name is Necessity and this is my daughter, Invention. 

Is that a pigeon in that hole?

No one likes to be pigeonholed. It feels demeaning and dehumanizing. If we are categorized we lose our individuality. If the categorization happens to be  right, it feels creepy. If it’s wrong it’s  downright offensive. Reaching subjective conclusions  based on objective criteria omits real life and personal circumstances. It’s profiling and doing it to people strips them of the parts of them that are unique. It omits humanity.

We all do it in a general way. Advertisers target an entire demographic because percentage wise there is sufficient accuracy in these categories. Applying general conclusions to general groups of people is fine.  Applying general  conclusions to a specific person is not.It just does not work for everyone. You are a white, middle aged, professional female; hence you love Volvos and sushi. What? No I don’t? (OK, I do like Volvos, but it’s very difficult to get a wheelchair in one.) You are teenage African American male, hence you are into hip hop and sagging pants (are those still in?). The dapper African American high school student who plays classical piano might take exception to that. 

The more unusual the objective criteria, the more likely you are to be wrong.  It is one thing to be wrong about the type of car I might like and quite another to express conclusions about someone’s life. It happens to Maggie all the time. People see her disabilities and assume she has a miserable life.  They impose their own value judgments on her and decide what her life is like. Perhaps, they think if that were me I would be miserable, hence she must be miserable.   Newsflash – she’s not.  If you’ve ever read anything in this blog or ever spent more than 30 seconds with Maggie you know that.

Doctors – who dedicate their lives to curing others - cannot cure her disabilities. They can cure her illnesses but not her disabilities.  Perhaps because they can’t “fix” her, some (not all) assume her life is  terrible.  Some refer to her poor quality of life.  They are wrong, but they are powerful and in a position to apply those judgments in dangerous ways.  I quickly remind them that her life is different, and we think the quality is quite good. I ask them to give me the medical information and let us decide the quality of life issues. That tends to stop them cold. They may think I’m crazy. I really don’t care. My job is to protect her, even from those who will help her.

Don’t misunderstand or think me naive. I completely understand that Maggie got a raw deal in life. I know that better than anyone. But Maggie is almost constantly happy. Things you wouldn’t even notice absolutely delight her. She is smiling or laughing more often than not, because she finds her life just delightful. That to me demonstrates a pretty good quality of life.

I pity the fool who tries pigeonhole Maggie. If they can get past their own bias, she will surprise them every time.

And her crazy mother will throw sushi at them from her Volvo.