When (semi) good pictures go (painfully) bad

We just got back from a fantastically relaxing beach trip with my family.  Maya had fun playing with her cousins, and the extra adults around meant that we had 3 cameras out and about for spontaneous photoshoots.  On the last night we were there, my dad used my camera and took the following series of photos.

(Right before we took these I said to Dave "I'll be in the stupid pictures, but I'm not using them on the blog or framing them or anything---this shirt is too billowy and unflattering, and my hair is all beachy and wind-tangled.  (grumble)"   But then . . . well, you'll see . . . so I'm swallowing my pride and sharing them anyway . . .)

Dana: Cheese!

Dave: Cheese!

Maya: Cheese!

Dana: Cheese!

Dave: Cheese!

Maya: Cheese!

Dana: Cheese!

Dave: Cheese!

Maya: Guys, this is kind of getting old.

 Dana: Cheese!

Dave: Cheese!

Maya:  Seriously.  I'm getting really bored.  Can we do something else?

Dana: (sigh) Cheese (sigh)

Dave: Cheese!

Maya: Really . . .anything else.  There must be something else to do up here.

Dana: Cheese!

 Dave: Cheese!

Maya: Hey!  Mommy, I'm over your head!  I think I can even reach your hair!

Dana: Chee---Hey, is something on my head?

Dave: Cheese!

Maya: I CAN REACH YOUR HAIR!!!!!! 

Dana: AAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHH!!!

Dave: Pictures are so relaxing . . .

Maya: Gotcha!  (cackling)  I told you guys I was bored!  Take that!

Dana:  Ayyyyyyyyyy!!!  My hair!  I need to save the hair I have left!

Dave: I wonder what we'll do tomorrow.  I hope we go back to the beach.  I should open my eyes but I'm just too relaxed.

Maya: Hair is like a handle for your head.  This is SO FUN! 

Dana: Seriously, I have tears in my eyes.  Someone get this child to release me.

Dave: Wait.  What's going on here?  Dana, stop making that face.  We're supposed to be taking pictures.

Maya: I'm not letting go.  Ever.

(Giveaway coming sometime between now and Monday.  It's not a big prize, but it's something fun---one of Maya's favorite things.)

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 :)

Hungry like the wolf, part 2

Parker is experiencing toy confusion.

This cow is mine

Actually, that's misleading---he is experiencing toy confusion, but not with the cow.  He just likes to cuddle the cow.   The blue car, however, is another story:

Sigh.

To be fair, it's not his fault.  It's Maya's fault.  Maya likes to play with her toys on the coffee table (which we encourage, because then she's standing and bending and twisting instead of just sitting on the floor).  The coffee table is right next to Parker's crate, and now she likes to sneakily load her toys into his bed. 

Exhibit A:

Exhibit B:

Obviously, that's enough to get a puppy confused.  The other night we didn't notice that Maya had put her blue car in the crate, and he slept with it overnight.  In the morning, he woke up with it there and started chewing away . . . and now he thinks it's his.  He'll sniff around her pile of cars, gently lift out the blue car, walk away and flop down somewhere and happily chew to his heart's content.  

At this point I almost feel bad shouting, "Parker!  Leave it!"  . . .  because he looks up at me with such sincere curiosity, it's like I can hear a little voice in his head saying " . . . but it's just my blue car!"

Oh, and Maya thinks it's really funny when he takes her toys.  She'll hold them up to his mouth, and if she can get him to take it (he's so gentle) she starts giggling madly.  So that's helpful.

I am mildly concerned that if I'm not vigilant, we will have a Little People/little animal/little car massacre on our hands.

In other news, I had a hysterical breakdown on the phone with our insurance company today.  I cried, stomped my feet (yeah, that's embarassing but true) and when the representative told me that she "could put in a request for a supervisor to call me back, but they were both busy right now" I got menancingly quiet and say "Oh no.  I'm not getting off this phone.  So you can pretend to be looking up all of these claims, we can talk in circles about my paperwork, or you could just tell me about how your day is going if you want.  But I'm not. getting. off. this. phone."    I hate that so much of my time is spent fighting with people (insurance, agencies, DOT, soon to be DOE) and organizing paperwork in order to fight more effectively. 

It's no wonder my hair falls out.

Under Pressure*

Why are we having evaluations this week?  What the heck is CPSE?  Here's my understanding of the situation, in a nutshell:

In the state of NY, therapies for children are provided through EI (Early Intervention) from birth until their third birthday. We’re starting to prepare for Maya’s transition out of EI and into CPSE(Committee on Preschool Special Education) which is run by the DOE (Department of Education, aka Board of Ed.). In general, the DOE is known for being extremely stingy with services, and very difficult to work with (placing children in “special needs” schools that are across the city from where they live, drastically cutting therapies, not providing one-on-one aides without a huge fight, etc.). 

By the way, this all ties in really well to the learned helplessness model again---it's us parents vs. the DOE, very David vs. Goliath-esque-----and they know all of the rules and hold all of the power, while we're scrounging around trying to gather as much infomation as possible to fight back with.


So this week we have a group of evaluators coming to, well, evaluate Maya. This morning we had the PT evaluation---later this week we’ll have OT, Speech/Feeding, and Psychological evaluations. Each evaluator will ask me some questions, watch Maya, interact with her, and administer some type of standardized assessment. The scores of each assessment will say how delayed she is in each area of development, and those scores will be used at the big meeting with the DOE in which we try to find an appropriate preschool setting (and whether she’ll be at a therapeutic—aka “special needs”—preschool, or whether she would be in a mainstream preschool and get therapies at home).

Also, I’m calling preschools, setting up tours, trying to find schools in the area. Trying to figure out what would be best for Maya, when really I have no idea. How can anyone know this stuff? I’ve gotten the name of a place to call this week that is supposed to help parents navigate all of this a little bit easier . . . I’ll be interested to see if I can find some guidance.

This stuff is all so stressful. I feel like a few months from now, my hair will fall out again.

I'm not joking.

I have felt my base stress/anxiety level increase, and I can’t really figure out how to best combat that. If you saw my last post, you saw what our schedule looks like . . . granted, this week is busier than usual, but even on a “normal” week, all of those therapies are there. We’re busy. There’s not a lot of time for relaxation or unwinding.  There's a lot of worrying.  A lot of "what if there's something I'm missing" and "what if there's some school that is only doing tours right now but I don't find out about it for a few months".

(sigh)

December is my favorite month, and I don't want it to get lost in this.  I've been addressing our holiday cards :)  I'm going to start decorating this week, and wrap presents.  We made reservations to go out to dinner for my birthday.  I'm going to make shopping lists.  I'm trying to figure out how to Maya & Parker proof our future Christmas tree, since they are getting more and more mischievous.  Like this:

That's Parker in the bottom corner, saying good morning to Maya.  And that's Maya, who somehow was trying to undress herself in the crib, apparently.

I'm going to try not to let this giant dark evaluation/CPSE/DOE/preschool placement cloud overwhelm my favortie month.  But I hate the fact that it feels like it will take effort.

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.