You live for the fight when that's all that you've got*

(sigh)

I'm feeling a little bit beaten down. 

Friday we had our preliminary IEP meeting.  For those of you lucky enough not to know what that means, here's a quick and dirty summary.  Maya is a special ed student----she will be entering preschool in Sept and needs and "individualized education plan".  When a 3 year old has an IEP, it mainly specifies what type of classroom she will be in (the ratio of kids to adults), what therapies she will get, and other special things she might need (like an aide).

Due to the dire state of Maya's evaluations, I allowed myself to think "This hopefully won't be too bad.  Obviously, she needs oodles of services.  Maybe there won't even be an argument."   I read the reports, highlighted things, had letters from our pediatrician and private feeding therapist, supporting the fact that we need a lot of stuff (just in case), and put together an awesome binder.   I was totally prepared.  I even blew out my hair, so as to look professional and put together.

Yikes.

My faux hawk mullety 'do

Ok, my hair wasn't helping.  But with really strong gel, I tamed it into submission.

I'm not going to give a blow-by-blow recap of the battle that was the preliminary meeting, because I  don't have the emotional stamina.  But here's the summary.

Pro's:  Maya will definitely have a seat in a center based pre-school (it's still up to me to find her a spot in a good school, but the city will approve that spot once I find it).  She will definitely have a one-on-one aide (paraprofessional).  She will definitely get the maximum number of therapy units that are provided by whichever school we go to (each school has their own maximum---for example, one school only provides a max of 2-30 minute PT sessions per week).

Con's:  In addition to the therapy in school, I want her to have therapy outside of school.  The guy in charge of our meeting says no.  He says it's his job to provide us with an appropriate school setting and nothing more.  I say that I want her current level of therapies to be maintained, and that since the school can only provide a certain number of sessions, I want the remainder done after school.  He acts like I'm asking for the moon, I say that this is neither an uncommon nor unprecedented request.  We stare at each other.

The bottom line:  I now have a lot of work to do before the next meeting in April (that's when we'll actually sign the IEP and agree on the preschool and the therapies):

-I'm touring another preschool this Thursday. 
-After that tour, I need to figure out which (of 2 schools) I like better, and schedule a playdate for Maya to go to that school and be screened.  Hopefully we get a school that says that she's a good fit and they will provide her with a spot.
-I need to gather prescriptions, letters from doctors (as many as possible), letters from all of our therapists, progress reports from all of the therapists, and whatever other evidence I can think of to argue for the inclusion of after school therapy in her IEP.
-I probably need to hire an advocate to attend the April IEP meeting with me. (Strength in numbers and all that jazz)

Also, I'm swinging into high gear with putting together our dreaded insurance appeal. 

It's very difficult to feel powerless. 

I know what I'm doing.  My binders are no joke.  The way that I am able to write rationales, organize paperwork, compile data . . . I'm pretty good at it, I think. 

It's rip-your-heart-out-painful and I'm-going-to-go-postal-on-your-azz-frustrating to put together work that's so good you think "How could any rational person argue with this?"  . . .  and just have it met by a pencil pusher who says "Um, no.  End of story.  But feel free to file an appeal if you disagree." (Smug smile and a shrug)

(PRIMAL SCREEEEEEEEEEEAAAAAAAAAAAAAAAMMMMMMMMMMMMMMMMMMM)

In a teary conversation with Dave last night I realized that I need to find a way to compartmentalize this stuff more---to not take it personally when the insurance people send me to another dead end, or this guy says "I'm not going to give you any of that, but we can talk about it again at the meeting in April if you want." 

I have to carve out some sort of zen, centered life, with satisfying and pleasant things, so that insurance appeals, IEP fights, etc (there may be a few other similar battles on the horizon) just become projects-I'm-working-on, and not things that keep me from getting a good night's sleep, and make me cry frustrated tears.

(sigh)

On a lighter note, our OT went to a taping workshop on Monday and now likes to tape Maya up.   Hee hee.

PS-Grab the "My plane landed at Amsterdam International" button if you have a blog or website.  Putting it up does three things: 1. It makes you my new bff, 2. It breaks the ice in sharing some of your experience with your friends/family 3. It helps spread the message to others who may be comforted by knowing their not alone :)

Maya's got something to tell you

We're just starting to toy with the iPad . . .certainly not following any sort of structured protocol, just introducing her to the concept of using the buttons to communicate and trying to get her excited and interested in it.  (A lot of modeling, asking her to point/tap, and hand over hand stuff.)

She's very interesting in expressing one thought . . . milk.  She loves milk, she wants milk, more milk.

She's a milkaholic. 

Here, she'll tell you herself:  (this was shot on the tripod while her waffle was in the toaster oven---that's the tickticktick sound.)




A few interesting things:

-Even though she doesn't talk, she's very communicative.  You can see her initially point towards the milk button (0:18) before giving in to my urging to push "waffle".   Then she signs "milk" with her right hand (0:26) as I'm re-setting the iPad.

-She's a giant ham.  Can you believe that after I started laughing she turned towards the tripod with a big grin?  She's totally going to be the class clown . . . I wonder where she gets that from. ( Dave )

In other news, tomorrow I'm going to tour another preschool . . . nervous.  I'm also taking pictures of every other toy she owns for the iPad, fiedling insurance calls, researching how to do an effective insurance appeal, attempting to schedule Parker's neuter, and doing some household overall stuff.  And my hair is falling out again (seriously, I've got new bald spots).    I guess everyone who's driven and slightly type A always feels like everything is urgent and there are a lot of balls in the air . . . that's definitely the case for me right now.

Oh, and take my poll (upper right hand corner).  I'm curious who's stopping by here.  I know that some of the categories overlap (you might know me from an online community and have a child with special needs, for example) but just pick one and vote.  It takes 2 seconds and it will make me happy :)

Dance magic, dance*

I blew my hair out this afternoon. 

If you're thinking to yourself, "Hey, that looks kind of familiar" . . .

. . . then perhaps you were a  Labyrinth fan.

Seriously, it's come a long way.  I really can't complain.  But I can certainly make fun of it. 

Tomorrow is Dave's last day of work (before a WEEK off!) and the KIPP Staff Thanksgiving dinner :)  Let the holiday season begin!

I'm bringing sexy back*

If you're a tri-stater, you know that today's weather was not the best---rain, wind, and humidity.  Yuck.  So, of course, I picked today to blow out my hair for the first time in nearly 2 months.  Why?  Because I realized I was afraid to.

If you've been reading for a while, you know all about my hair woes.  Back at the beginning of August, I decided not to blow my hair straight for a while.  For one thing, the weather made it a losing battle.  For another, when my hair is curly it hides both the hair loss & growing-in-spiky-patches really well.  But this morning, as I threw more hair into the garbage can, I realized that it's been so long that I was afraid to see what it looked like.  And the only way to get rid of fear is to confront it head on (unless you're afraid of grizzly bears, or something equally hazardous).  So I blew it out.

Hello, gorgeous.

(working the side pose)

And this, folks, is why I've been wearing so many hats.  It's hard to walk around like this, without feeling like people must be wondering what the heck happened to your head.  While I'd like to think that I would just spit out random stories to staring onlookers ("Oh, my hair?  Have you ever heard of the Great Scissor Duel?  No!?  Well, you should see the other guy.  I actually took first place!") the truth of the matter is this:  When I'm out in public, I'm usually juggling our big jogging stroller, a whiny Maya, and our overenthusiatic puppy . . . I'm barely 2 feet out the door before I've totally forgotten about the state of my head.  So I take myself very seriously as I argue with the pharmacist for 10 freaking minutes about why they have-to-have-the-nebulizer-medicine-here-or-there-are-going-to-be-big-problems, and then when I catch a glimpse of myself in the glass at the pharmacy I feel totally ridiculous. (They found the medicine, by the way.)

This is as good as it gets, with some comb-over action:

I'm still losing a lot of hair, but it must be dispersed over my head more, because I'm not finding new bald areas.  I'm SO glad that I've been taking pictures along the way, because it's amazing to see how far I've come:

6/20:

7/20:

9/30

:)

My new 'do

Ever wonder what it would look like if  . . .

. . . you let a toddler cut your hair?

 . . . or fell asleep with several pieces of gum in your mouth that fell out and got into your hair and had to be cut out?

. . . or you put a blindfold on your hair stylist, tied one hand behind their back, and just said "go for it!"?


Maybe something like this:

As new hair grows in (hooray!) I've been left with crazy tufts that stick straight up.  If you've been checking out our albums on Facebook (apple picking, baby rats, etc) you may have noticed that I'm wearing a lot of hats lately----and now you see why! 

Don't get me wrong, I much prefer crazy cowlicks to shiny bald patches, but they are really distracting.  No amount of gel will hold them down, and it's hard to meet people and have normal conversations without acknowledging that I have weird vertical hair chunks all over the top of my head.  It screams "make a joke about Maya playing with scissors while I was passed out on the couch".  So as not to alienate people with jokes about being a neglectful parent and endangering the welfare of my toddler (weird, isn't it, that some people don't get my humor?), hats seem like the safest option.

(More hair is still falling out, but I'm not focusing on that right now.  Instead of shots, I'm now using a cortisone foam that gets applied to my scalp 3 night a week.)

Maya's fall schedule is nearly solidified, and although she's as busy as ever, the spacing of her appointments seems much better this year---I'm excited to have better chunks of free time!  At first glance, though, she's certainly a busy girl:

That's it for now----I just pulled 2 loaves of apple bread out of the oven, and they're calling my name :)

Zoo . . . Hair . . . CHEW . . . Where?

If I come up with a nonsensical rhyming title, then it totally makes my jumbled update-about-everything post appear cohesive, right?  Right.

1. Zoo:  We went to the Bronx Zoo the other day and had a fun time.  Well, Dave had a fun time:

Maya was so scared that she re-enacted her DMV pose:

Until Mommy came to save the day:

(Hmm, who's having more fun?  Maya or Mommy?  Or the magical glowing prairie dog?)

Fun at the petting zoo:

Miss Maya is attempting vertical movement more and more!  Here, some teetery walking holding on to only 1 hand!:

It may not be graceful looking, but who cares . . .

2.Hair: My hair continues to fall out at an alarming rate:

Ok, it's not quite that bad :)  Actually, I convinced Dave to cut my hair (with the balding patches, I've been hiding from salon folks----I don't want anyone messing with my hair, and I don't want lots of people coming to stare at it).  So we did a chop at home:

(not the most glamorous pic, but you get the idea)

3. CHEW!!!!!!!!  This is the best update by far (and if you check our Facebook page, you're already in the loop on this one).  Maya has come so far with feeding therapy that today Erica (her feeding therapist) said "No more jars (baby food)----she's an eating girl now!"  So, in theory, Maya could only be eating normal food now (with some exceptions---she can't do very hard things, like apples.  She can't manage something very complicated, like rice.  And she can't really regulate how much she gets in her mouth at a time, so we still have to feed her most pieces by hand.)   She's an eating girl!!!!!!  Real food!!! 

Here, she digs into dinner (yogurt, blueberries, some snacky stuff, and a cereal bar--not pictured).  The sushi belongs to Dave & me:

4. Where?  We're going away on Saturday and Maya has been studying up for the trip.  Here, Dave helps her to plan our week's worth of activities.  See if you can figure out where we're heading :)

Maya's got the munchies

Well, ladies & gentlemen, Maya is now nearly 26 months old and we are seeing a lot of feeding progress :)  One of the crazy things about working with her is that she goes from not doing something (for months and months) to suddenly just doing it.  So for month, we work on chewing, work on chewing, and not much happens . . . but within the last month or so she's an eating champ.

Some things she's tried:  blueberries, bananas, peaches, strawberries, cereal bars (loves them!!!), cheerios, scrambled eggs (not a fan), cheese, pancakes (her daily breakfast), lasagna, cheeseburger, toast, crackers, graham cracker, goldfish, bbq beef, crab cakes, mashed potatoes, ice cream. 

And I'm probably forgetting things.

:)

I've been a little down this week, a lot going on in my head, and a lot of hair falling off of it---ba dum ching! (um, that's how google told me to spell a snare-cymbal combo---not so sure about it)   We're kind of not making a lot of progress in a lot of areas (physically, for one.  Come on, Maya, you can stand up---stop being afraid and go for it!) . . . but the feeding stuff is great.  Finally, progress :)

And here's a video clip from the park this morning (if you're a fan on Facebook, you got an early peek at the video this afternoon!  You should all join our FB page for sneak peeks and bonus chats!).  Check out Maya chowing down on Cheerios:

Look away--I'm hideous!

(title ring a bell?  You may remember it from here.)

(Warning: This post is continuing a series on my hair loss.  It's not really funny or witty.  If you want to be amused, go here instead.)

The time has come for a hair update.  I returned to the dermatogist on Monday morning (thanks to Dave's mom for babysitting) and the news is not so great.   While the prednisone slowed my hair loss to a near halt, you can't stay on it forever (it can actually have some pretty nasty side effects).  So about 2 weeks after ending the medication, I noticed handfuls of hair shedding again, and thinning/bald spots on the top.  (Side note: The doc said that the side and back of my head still have "really thick hair" . . . maybe I can invent some sort of crazy comb-over situation?)
 
On Monday I had another round of cortisone shots (I couldn't count, but I would guess between 50-70).  Also, she suggested I try out Rogaine (and stay tuned for next week, when I join Hair Club for Men).  I bought the Rogaine but haven't tried it yet. 
 
Seriously, these pics aren't pretty, but if you're interested, here you go:
 
 

Eyeing a sprout (or spout?) of new growth up top.  (Dave thinks the still-unfilled frames in the bathroom are the funniest part of the picture.)

The way I used to part my hair---most of the loss has edges around this partline now

Um, scary

On the upside, the new hair growing in is coming in nicely (this big dark patch in the middle is all new).  On the downside, the new hair is only about an inch long.  If all of the hair on the crown of my head falls out I will have the world's most ridiculous mullet.

This is the new way to part my hair, with less bald areas showing:

And there you have it, folks.  As you can see in the zoomed out pics, I still have hair.  As you can see in the close ups, I'm losing a lot.  I shed some tears about it again this week, but I feel better now.

I think that when you're afraid of something (like losing all of your hair) it's easy to stress about it constantly and let the fear live in some part of you.  I learned a while back that you have to "confront the brutal truths" and still "maintain absolute faith"  (I apologize if I'm messing that up).  So, pictures taken and examined= brutal truth confronted.  And now it's time to move on again, and try to laugh as I move through my day, picking the constantly dropping hairs from my shoulders, clothes, etc etc.

But the loveliest of all was the unicorn . . .

So earlier this week I blew my hair out.  I like it straight much better than curly (it's cooler, more manageable, etc.) but it's easier to notice the hair loss when it's straight, so I've been alternating.

Well, imagine my surprise when I've finished blowing it out, and I notice that I have a very unicorn-esque horn of hair sprouting up in the back: (See it?!  Right in the rear of my part)

In a few more weeks it will be exactly like that dude from the Little Rascals:

So I realize that this sprout of hair must all be new growth. 

But it's a really thick patch . . .

so that must mean that there was a really big bald area . . . uh oh.

 I called my mom to demand an explanation----had she seen it (it's too far back for me to see in the mirror)?  Why didn't she tell me?  Her response "Oh, I may have seen that one."  Sigh.  I grabbed the camera to give myself an aerial view, and confirmed that anyone taller than me must have been getting quite a view:

At least you can see the thick patch of new hair growing in.  But, man, imagine how big that must have looked with no hair!  Yikes!

I returned to the dermatologist, eager to show off all of the new hair growing in, but she wasn't as impressed as I was (no fireworks or releasing of doves or anything).  She was somewhat concerned that I still have a a lot of hair falling out (join the club) so I was started on a course of prednisone in addition to the shots. (By the way, this time I tried to count the shots and got up to 56 before I gave up!)  Hopefully these steriods will kill off the rogue white blood cells that are attacking my hair follicles.

Another day, another bucket of hair

Parker and I are now on a schedule where I attempt to remove hair from some part of his body about every 3rd day.  Sometimes I'm really ambitious (like yesterday) and we have a morning session and an afternoon session.  Other days, not so much. 

I'm of the mind that if you're willing to put in the effort to research and try something new, and you're not afraid of some failure, you can pretty much learn to do anything (I put that in bold because it's a pretty important life philosophy).  And having Parker around gives me daily opportunities to challenge this theory.  Most things are going well, but the dog grooming is kicking. my. ass.  Initially I thought "$80?!?  Every 6 weeks?!?!  Oh hellllllll no.  I can do this."  Now . . . $80 for a dog haircut seems kind of like a bargain.

Today I buzzed his body shorter (poor guy still gets so hot when we're out walking!) and did 1 foot halfway.  So 1/8 of his feet is done.  Not including toenails. 

Here he poses with the bucket of hair I removed today:

In other hair news, mine is still falling out.  A lot.  The bald patches are widening, despite the shots, extra vitmains, and medicated shampoo that makes my scalp all tingly.  When I shake my head it smells like a medicine cabinet.  BUT----as more hair falls out, new little hairs are growing in!  Check out the comparison pictures:

Before (5.15):                                                                   After (6.3):  (See the fuzz???)

Closer up . . . see, there's little fuzzy hair there.  Something's happening!

Before:                                                                             After:

I felt a little crazy taking the pictures at first, but now I'm glad to have them for comparison purposes :) 

Well, this doesn't seem fair

I'm losing my hair.

Have you ever heard someone say something like "These kids are going to make me lose my hair"?  I always thought that it was just a crazy thing that old people say.  Like when someone says that if you sneeze with your eyes open your eyeballs will pop out (that's not true, right?  Anyone willing to test it out?).  But, in reality, it seems like Maya is making my hair fall out.

 In clumps. 

And now I have bald patches. 

And pictures to prove it.

Before we get to the pictures, let's take a moment to dwell on how much this sucks.  I don't want to lose my hair.  I don't want to have giant bald patches.  I had a full on panic attack (with tears and a hysterical can't-catch-your-breath-hiccupy-kind-of-conversation with my mom) yesterday afternoon about it.  This morning I went it to the dermatologist, who said that I have alopecia areata (fancy latin name for bald patches, caused by an autoimmune response in which my body is attacking the hair).  She injected me like a million times (ok, somewhere between 35-60---I lost count because she kept talking to me) with cortisone, which will make my body stop attacking the hair follicles so that new hair can grow in.

My googling tells me that this type of hair loss is often caused by a major stressor a few months prior, which totally makes sense to me.  A few months ago I was cycling through the stages of grief, coming to terms with the fact that Maya's disabilities may not be as short lived as I had hoped.  I was depressed, I was finding a support group, I was changing her therapists.  I was kind of a mess for a few hours everyday.

But how unfair is that----that you go through a traumatic time, and then a while later lose your hair?!  What the hell.  Seriously.

So hopefully I'm going through a big shed, and the hair will come back rapidly.  Dave asked me yesterday (mid-panic attack) if I'm stressed about things now, and through my tears I laughed and pointed at my head and said "Yes!  My hair!"

But I've got to at least put it out here.  I often things of the Indigo Girls saying "You have to laugh at yourself, because you'd cry your eyes out if you didn't."  And so, expect balding jokes, people.  And, if things get any worse, expect some unique fashion statements (would it be weird to glue a flower to the top of my head?  or color my patches with magic marker?).

And now, pictures:

A bald patch in the front, along the part:  (try to ignore the frames without pictures that adorn our bathroom)

The biggest and scariest patch.  I hate to even look at this.  Thank goodness I'm fairly tall and have enough hair to change my part around and cover it.

Luckily, I still have a lot of hair.  And with some part maneuvering, I can minimize damage. 

If this is the worst that it gets, it's not really a big deal and somewhat funny.  But I'm kind of stressed out about it getting worse.  Oh crap, I'm not supposed to get stressed, it makes my hair fall out. 

Oh, irony.

Speaking of irony, I used the new clippers to shave (or attempt to shave) Parker today.  35 minutes in, I'm sweating, he's panting, there's so much fur in my bathtub that it looks like I killed a sheep, and he still looks like this:

I think he's taunting me.