The week that nightmares are made of

Last night I had nightmares.  Nightmare(s)-plural.  All of them directly correlate to stressful events on the horizon (well, honestly, one might have been related to the Dexter episode that I watched right before going to bed). But mostly they are due to the week ahead.

The week's itinerary

Today: Most of the day was spent trying to clean and restore order, which is apparently unmaintainable when we have a week of vacation.  This afternoon Maya got two fingers caught in the elevator door (to be fair, this wasn't a planned event, but it caused an hour of chaos, nonetheless).  Then came the return of our EI speech therapist (who we will be seeing once a week---very exciting---and I'll have to write about the re-balancing sometime soon). 

Tomorrow: More organizing (yeah, we're that messy), cleaning out old toys & clothes, donation trip to Goodwill, then draggin the Christmas stuff out of storage.  Also, trying to plan this year's holiday card.  (Yeesh--I wish last year's hadn't been so good.  I feel like the bar is set kind of high.)  Support group meeting in the evening (had to skip last time, can't do it again).

Wednesday: Dave &Maya are playing hooky so that we can go to Yale to meet with a new geneticist.  All new appointments are unsettling, but new geneticists are the worst.  At this point, the thought of them finding a diagnosis is more scary to me than the not knowing.  This trip has the potential to link us to a interesting team . . . but I'm getting ahead of myself.  We'll have to wait and see.  But I'm feeling nervous.  (Also, bailed on book club, because it's just not going to happen after we arrive back, physically and emotionall wiped out, from CT)

Thursday:  I start my new job.  In the future, most of my working hours will be logged from home, but I need to be in the office a bit this week and next week to train on the system I'll be using.  (It's academic work for a grad school, drawing on my teaching experience.)  I haven't started a new job in 8 years.  And I'm not really a people person.  So, a little nervous.  (Also, bailed on "Parent's Night Out" with the folks from Maya's class this evening, because I will be beyond frazzled.)

Friday: Maya's asstistive tech re-evaluation at school.  Ugh.  She's had the TechSpeak at school for a month, and is doing well with it.  Now the DOE people will decide whether she should stick with that, or get a Dynvaox Maestro (which seems to be their high tech device of choice).  I don't even know what I want to happen here . . .

• if they want her to stick with the low tech device, she will outgrow it sometime soon. She already has to supplement heavily with the Word Book, because the Tech Speak just can't hold all of her words. However, at least it's familiar to her right now.
• if they give her a Maestro, then she loses what she's currently using (and is used to).  Also, now that I've met with the Dynavox and PRC people, I want to trial each one of their devices and figure out which is the best fit for Maya.  What if they give her a Maestro and a month from now (when I get around to training and trialing) I can see that they Vantage Lite is a better fit?  We can't keep switching systems on her, it's not fair.  (sigh)

So, that's the week.

In other, more interesting, news:

• Last week's Thanksgiving post quickly becamse my fastest shared post ever (surpassing Amsterdam International with over 470 Facebook shares in less than a week).  It also generated the most page views that I've ever had in a day (2,051).  Pretty cool.
• If you missed it over the weekend, check out the post from Sunday, in which you can see how Maya uses the Word Book.  If you're trying something similar at home, make sure to read the comments---there are a few good ideas there.  (And if you have any ideas to share, don't be shy.)
• Go check out the 2011 Holiday Toy Guide for Kids with Special Needs, put together by Ellen over at Love That Max.  It's full of great ideas!  Plus, if you scroll about halfway down, you'll see a familiar face!  Hint: It's Maya :)

* I had to write this twice, because the internet ate it the first time around.  This draft is much more choppy and fragment filled, but it kind of matches my mental state anyway, so it's staying as is. 

July is like that time I was stuck in an elevator

I'm not a fan of elevators.

Particularly in the summer time, in the older buildings where the ventilation is questionable and the elevators are small . . . there's a little voice inside my head that starts when the doors close, chanting "just-get-there-just-get-there-just-get-there", and a small but undeniable breath of relief when they open again.

Back in the summer of 2005 I was stuck in an elevator for 24 long minutes . . . and during that time I miraculously only had about 20 seconds of panic, simply because more than that wasn't an option.

It was a tiny elevator.  Dave & I were accompanied by a very large middle-aged man, a woman in her late 20s, and a very elderly, frail woman who had only gone downstairs for a moment to pick up her mail.  The (extrememly tiny) elevator started up only to stop midway between the second & third floors.

A high pitched
EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE alarm started screaming.

It was June. It was hot. There was no ventilation.

We were packed in like little standing sardines, literally about an inch between each of us.

All of our eyes were wide and I could feel blood rush to my head and my inner panic voice start with "Nonononowe-have-to-get-out-of-here".

And then the other man totally. lost. his. mind.

He pushed past everyone to the front of the elevator (which made the elevator shake) and started pounding on the door, which made the elevator shake more (scary).  He was screaming (screaming) "GET US OUT! I CAN'T BE IN HERE! GET ME OUT OF HERE! HEEEELLLPPPP!"


And instantly I took the panic rising in me and put it out, like dunking a match in water, because I had lost the luxury of having a meltdown.  I don't think you can have 2 hysterical people in an elevator, and his hysteria clearly trumped mine.  So he got to panic and we focused on convincing him that this wasn't a big deal.  Eventually the NYPD arrived to set us free.  (To this day I ask myself "is this elevator too crowded to spend 20 minutes in" before I make an elevator commitment.) 


Anyway, this July is kind of like that elevator.

For the past 3 days, I've been flailing, feeling an anxiety rising up with every appointment that gets added to the calendar.  Our therapy schedule has totally flipped, as everyone shifted for the summer days . . . this leaves me standing in front of my giant calendar early each morning, rubbing my eyes and mumbling "Wait, what day is it?  And who is coming here when?" Also, since everyone vacations at some point, each therapist has to squeeze in make-up sessions while they're around.

On top of that, we have a crazy number of appointments.  This week included the 4 hr audiology eval and a 1.5 hr functional hearing eval.  Still to come this month are (chronologically): a physiatry eval/revisit, preschool registration, another hearing eval, an opthamologist eval, another hearing eval.  And possibly an ENT follow-up thing.  And there are only 15 business days left this month.  That's a lot of appointments. (Also, because the team that we are working with is fantastic, there are a lot of emails, surveys and inventories that have to be completed before & after appointments. The fax machine has been buzzing with reports and data from the appointments. Papers are piling up.)

I had to buy a travel calendar to carry in the diaper bag because I can't keep it straight.

For the past 2 days my inner voice has fluctuated between " I hate July I hate July I wish that this was done already" to "How will we ever make it through July?" to "One day at a time, one appointment at a time, we will get through this month".  That seemed like progress, but then a flash of realization today . . . am I wishing away a month?  A whole month?

My big goal for this month of my life is just survival? 

That can't be right. 

So I'm putting out that match of anxiety again, as I will not allow myself the luxury of struggling and moping through a month.  I am consciously choosing to pull out my most zen self. 

I will not rush through this month.  There will be sprinklers. 

There will be ice cream. 

(There may also be less lengthy blog ramblings . . . que sera sera.) 

For the therapists, from the mom

It's been over 2 years since we started therapies.  We are lucky to have a spectacular team of therapists who love Maya dearly, and I consider to be surrogate family members.  But we went through a few others before we had our perfect team, and before I forget what the beginning was like, I thought that I should write this stuff down.  So, here are my thoughts for the therapists, from the beginning.


Come on in, stranger.

Welcome to my shambles.

My sweet, beautiful, wonderful child has just been through a series of evaluations specifically designed to figure out exactly where she doesn’t quite measure up. Then I got to read about her shortcomings (quantified . . . lovely. How lucky are the parents who never get to know their child’s percentile ranking on their worst skills). I sat before a scary official who’s primary goal is to keep costs low, and I fought to get as much therapy as possible . . . I have no idea what you all will do, but figured that “more” = “better”.

And here you are.

And I can’t help but slightly resent you (Just scheduling this initial meeting was challenging enough. I don’t want this for my kid. I want to be at the park, or the zoo. Not here.) and have all of my hopes pinned on you at the same time.


Please help her.



Please help me to help her.



We’re going to spend the next few years together, for better or worse. So let me share a few thoughts right up front----

First, the basics. Timeliness. You might be of the mind that 5-10 minutes late isn’t really “late”, it’s basically on time. I am not of that mind. Here’s why. I will always have my child ready for you 5 minutes early . . . so, if you are 10 minutes late we will have spent the last 15 minutes waiting around talking about your arrival. Also realize that we have 2 other appointments today . . . I knew that we had exactly 35 minutes between our last session and your arrival, which was, sadly, not enough time to get to the playground, so instead we had to settle for a quick snack and a walk around the block. Had I known we would actually have 10 extra minutes, we would have had time for the playground. I could have talked to neighborhood mom friends, and she could have played like an average kid. But here we are, sitting in the living room and watching the clock tick and getting more sad and frustrated with each passing minute that we could have been doing anything-other-than-waiting-for-you.

If, for whatever reason, you are running late, please let me know. If you are supposed to arrive at 3:30, texting me at 3:33 is not letting me know. It’s better than nothing, but only slightly.

And for the love of all that is good, if you arrive late you better be staying late. I don’t care if you have another appointment right after us. If you arrive 5 minutes late and leave on time, I will question your devotion to my child and think that you are just trying to pass the time.

Next, involve me. You have the therapeutic knowledge, and I have the knowledge of my kid. Let’s work together. If you ask me “Hey, are you open to taping her hands? Here’s why I think it would be a good idea . . . what do you think?” I will be open-minded and work with you. If you tell me “I’m going to tape her hands”, I will feel bossed around. Remember, we currently have 5 therapists, and each of you has your own agenda (and don’t even get me started on the doctors). Please let me be the mom and make decisions for my child, even if sometimes we don’t see eye to eye. If you let me be involved in the plan, I will be much more likely to go along with your ideas, because I will trust you.

Thirdly, I will ask a lot of questions. I will learn to watch my child and make mental notes, and hit you with a list of questions. (“Why does she move her tongue like that?” “How can I get her to unclench her thumb?” “ Is there a way to position my hands to help her balance better?”) I will not expect you to know every answer, but I would greatly appreciate it if you could help me find them. A simple “Hmm. Let me talk to my colleague and get back to you on that. We’ll figure something out.” will make me indebted you---you listened to me, admitted that you’re unsure, and committed to trying to learn more about how to help my kid. I will love you for this.

Finally, above all other things . . . please love my child. Or at least pretend that you do. I am scared for her, and I feel like we’re alone. I worry about if people will understand her, or put in the effort necessary to do so. I worry about whether people on the street will look at her differently. I worry about whether she’ll have friends.

You, therapists, are her first friends. She’ll learn to expect one of you when the doorbell rings, and (hopefully) she’ll get excited when she realizes that you’re here.

You’re the first people that she gets introduced to, and I’m nervously hoping that you’ll offer her smiles and hugs and encouragement.

If you love her, her days aren’t filled with “sessions”, they’re filled with “playdates”. She will have fun and learn and grow, and I will be eternally grateful that a) you are helping her and b) she is none the wiser. I want to think “she’s so lucky to have all of these great therapists coming to shower her with attention!” and not “poor kid, never gets to play with other kids because all we get to do is therapy.”

Who doesn't love naptime?

This week is giving me a smack down.  It's laughing at me . . . "What's that?  Preschool is settled and you think you're on top of the world?  Well, how about a terrible hearing evaluation (smack!)?  And an impossible decision to make about another medical test (smack-smack)?  And a dermatological issue, and an allergist appointment (smackitysmacksmack!)?"

I cried on the phone with a doctor today.  The good news is, I don't think he could tell.  The bad news is, I'm clearly a little overstressed if I'm in tears just talking about decisions that we'll have to make a few weeks from now. 

(Pull it together, woman)

Maya helped me destress by finding the perfect book to read this morning:

Nothing to see here, Mommy.  I'm just pickin' a book.

 I know it's in here somewhere . . .

  

Victory!

And when naptime rolled around, she was as ready as I was . . .



Funny, that's exactly how happy I am when I get to take a nap.

A doozy of a day, and memory lane

Today stunk.  Coming off the high of the weekend's celebration, it was a big letdown.  The hearing test didn't go well, so we may have to do a bigger test.  On an unrelated note, one of her ear tubes is clogged, so I'm waiting to hear back from the ENT about drops or something.  Had to schedule a dermatologist appointment because she's scratched herself up and is now in a vicious scratching cycle, and an allergist appointment later this week means that we're at 3 doctors' appointments, so far anyway.  Plus therapies.  Yikes.

You know what made me smile tonight after my lousy day?  Pizza and beer. Old videos.  Ok, old videos and pizza and beer.  Have a look at a few old favorites . . .

This was the first video that I took on my own . . . Dave was working, it was a Monday so I was off from work and thought I would record how happy she was waking up  . . . (ignore my sugary voice).  She was close to 4 months old here:



This was her first laugh, and second and third and fourth . . . literally.  Dave was taping, and she laughed---like a little magical song!  And then we were so excited that we were laughing, and then she was laughing more, etc etc.  She was 4.5 months old here:



Her second trip to the dog park. (If you can handle super grainy old cell phone video, her first trip to the dog park, in which she laughed so hard that she was sick, is here.)  She LOVED dogs.  She still loves them now, but back then she LOVED them.  This is why getting Parker was so perfect.  You can't watch this video and not smile.  I double dog dare you to try.  She was almost 1 here.



:) 

The balance

Tomorrow we have our IEP meeting, when (hopefully) we will sign the paperwork that puts Maya in the preschool that we really like, and then a big weight will lift off our shoulders.  :)

A few months ago we had the preliminary IEP meeting, in which I clashed with the CPSE official.  I said that I wanted a bunch of after school therapies approved, he said that we should just start school and then come back with the school team in the fall if we all think Maya would benefit from more therapy.  I said that wasn't good enough (because really, with her evaluation results, she should totally qualify for additional services).  He said too bad (basically).  I ordered IEP books and planned a fight.

And then I changed my mind.

I asked questions of our therapists, and then spoke with other families whose children started preschool this past fall.  I researched.  I thought about school starting, schedules changing, no naps (the preschool doesn't have naptime), and realized that I only want Maya to have therapy maybe twice a week after school.  Then, I decided that the afterschool therapy we need to keep is the private oral motor stuff, which targets both feeding and speech (the therapist is PROMPT certified, for those who know/care about speech stuff).  She'll be getting OT, PT and speech at school, and I feel like her OT and PT needs are more typical than her oral motor issues.  That's where we'll need an afterschool specialist.

I don't make decisions lightly.  There was ruminating.  There were eyes-filling-with-tears.  There was anxiety.

Because if your child has special needs, you think a lot about needs.    The need for PT to address balance, walking, climbing stairs, core muscles, etc.  The need for OT to address fine motor skills, eventually holding a pencil, dressing and undressing, etc.    The need for special instruction to address play skills, attending to activities, interactions, etc.  The need for speech & feeding to address, well, speech & feeding.  And it's very difficult to determine which things are most important, which ones to focus the most energy on . . . but you have to make those choices, because it's really hard to work on all of them, all the time. 

But we made our decision, and we're ready to (hopefully) sign for the school!  And we're excited!  And hoping that it goes smoothly!  (Send good thoughts, the meeting is at 9 tomorrow morning.)

And when I was telling someone (someone lovely, who only has Maya's best interests at heart---someone who meant totally no ill will at all) that we're going to sign for the school and not argue for afterschool services right now (although I'm keeping an open mind about meeting in Oct/Nov to add services in) this person said, "You're only going to take what the school offers?"  And I said "Yep."  And they said "I think you should do more."

(I think I clenched.  Then it started to echo in my head.)

I think you should do more.

(and then my stomach dropped)

First off, Maya has a lot of people in her life.  She has 5 therapists (and another 3 that we used and then parted ways with), 6 doctors (and another 3 that we used and don't currently need), and a bunch of family and friends, too.   The decisions that Dave & I make on her behalf might not be everyone's ideal choices . . . but frankly, this isn't a democracy.  When I was thinking through our options, I asked for opinions and advice from the members of our team . . . but I'm not polling the crowd for votes.  We're the parents, it's our decision.  This is our life. 

I think you should do more.

Second, this is our life.  Life. 

Where does the balance fall between life and therapy?  It's a tough question, isn't it?  For the past 2 years, therapy has filled a large percentage of Maya's life (and I wouldn't change that if I had to redo it.  She loves the therapists, they love her, and she's making great progress).  We have 17 units of therapy each week . . . and when someone asks if we want to get together, I have to sheepishly explain that we're only free from 10:10-10:50 on day A, or from 12:15-1:15 on day B.  Despite the fact that Maya is only 2 and I'm a stay at home mom, we are constantly busy.   We are a revolving door of therapies and doctors appointments.   Since Early Intervention is a birth to 3 program, it was easy to think "3 years of intensity----we'll do everything we possibly can!"  (I even left work, remember?)

But now we're leaving EI and going into the school system.  And I'm starting to wonder . . . how long is this race?  It's certainly not a sprint anymore . . . is it a marathon?  A half marathon? How many years will Maya need therapies for?  

And in looking at a longer road, it's time to think more about the balance.

Because I certainly don't want to look back and wish that we did more.

I think you should do more.

I think we should do more, too.  

More time for playdates in the neighborhood. 
More time giggling at dogs in the dog park while Parker runs and we enjoy the sunshine.
More time walking at a leisurely pace (and less time glancing at my watch to see if we need to race back for therapy).
More time at the playground, or sitting on a blanket in the park.
More time for Maya to walk outside (instead of throwing her in the stroller because we don't have time).
More time to play at night before a super tired little new preschooler has to sleep.
More time for spontaneous trips---the zoo?  the museum?  the grocery store?
More time when it's just the 3 of us.
More time, more time, more time.

Not only am I thinking about Maya's therapy goals, I'm thinking about her life.  And our lives.  And I want to celebrate in September, and get her off the bus and play . . . not think "I'm sorry you're so tired honey but let's just hop in the car and run over to your PT/OT session." 

She will (hopefully) be going to a wonderful school where she will be learning and developing from 8:30-2 every day, surrounded by adults who are highly trained in working with children with special needs.   

So how about after she gets off the bus, 3 days a week she'll be therapy-free and just get to be a 3 year old girl? 

How about we don't stretch her to the point that she's asleep or in tears by the time Daddy gets home?

How about no more frustrated tears for me when I can't figure out what to cancel in order to fit in an appointment, or a playdate, or a birthday party?

How about we stop racing, and try to hit a sustainable stride?

So here's to tomorrow, when we will hopefully have a simple, amicable, stress-free meeting, the papers will be signed, and our spot in the wonderful preschool will be secured.

And (hopefully) here's to next year, Maya's first year of school, where we will walk the tightrope of therapy life and real life, and make steady progress and lots of memories.

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 :)

I got into a street fight* this morning

*By street fight, I mean a yelling fight with a stranger on the street.


Ok, blog readers, I need your suggestions.  I feel like this is bound to happen again, so if anyone has advice for how to proceed I'd love to hear it.

Background: In NYC, parking is tough.  Some ritzy buildings will put orange traffic cones out to block cars from parking in certain spots (like to keep the entryway to a building open).  While this tricks a lot of out-of-towners, they don't have the legal right to block a spot (in most cases).

Also, the spots that I'm talking about here are on the street, so I needed to parallel park--to back in, then pull forward.

The scenario: There is a diplomat loading/unloading zone near Maya's therapist's office. They put orange cones along the spots and a "No Parking" sign in the middle. The diplomats pull up (with their hazards on), get out, move the signs, and then park. With DD's parking permit, we are now entitled to park there, but I've been avoiding it because I knew there would be drama.

Today I can't find any other spots, so I pull up, move the signs, and start to back in when a guy appears out of the building and rushes behind my car with the sign and puts it down. I get out and this conversation follows:

Him: You can't park here, diplomats only.

Me: I have a handicap pass, I'm allowed to park here.

Him: No, I have people coming in all morning!

Me: I'm sorry, but I'm legally allowed to park here-please move!

Him: Well, you have to park there!!!! (pointing to the spot the furthest forward, as there is a row of 3 spots available)

Me: Ok, fine. I'll pull up. But you need to move out of the way so that I can back in first. Then I'll pull forward.

Him: No, you park up there!! (the front of the spot)

Me: OK! But you have to MOVE so that I can get in!  I can't back in if you don't move that sign back further!

Him: (Stares at me, hand on the "no parking" sign.)
 
Me: Sir, if you don't MOVE THAT SIGN I'm going to back over it with my car.  And if you don't MOVE YOURSELF I'm going to call the police (gets in the car, puts it in reverse)
 
He moves.
 
I park (in the front, like he wanted, because I'm a NICE HUMAN BEING) and unload Maya while he walks around my car and mutters to himself.
 
I was amazed when I got back to the car that it hadn't been keyed or double parked or whatever.
 
So what do I do when this happens again?  Because it definitely will.  And I got so upset so quickly (especially because we had about 5 minutes to get to the appointment on time) that  I was *this* close to yelling at him "Hey, do you have kids?  Can they walk?  Well then thank your lucky stars because MINE CAN'T and we NEED TO PARK HERE so just GET OUT OF MY #@%$##@%  WAY!"
 
But that wouldn't have helped, right?
 
(Sigh)
 
I'm so tired of feeling like I'm fighting all the time.   I don't want to have to justify myself to every idiot insurance agent and entitled doorman that I come across.
 
Maya cooperated by going stiff as a board when I took her out of the carseat (it's a new game, so that I can't put her into the stroller), so she was laying completely horizontal across both of my arms as I took her out of the car . . . it must have looked like she had a broken back :)  It kind of made me laugh, it was like she was hamming it up :)
 
Anyway, I'd love help with this one.  Post thoughts in the comments, on FB, or email me directly (uncommonfeedback@gmail.com)
 
And the Holiday Card goes up in just a few hours!

And go round and round and round in the (ridiculous insurance) circle game*

If you "like" us on Facebook, you have been privvy to a few random I'm-going-to-crawl-into-a-hole-and-die-because-I-can't-handle-dealing-with-the-insurance-company rants.

It's got me thinking (more) about all of the bureaucratic nonsense that parents of children of special needs end up dealing with.  Yeah, I know that many people without kids with SN have insurance wars, and many people deal with other bureaucracies . . .but it can become (literally) a full time job for parents of children with special needs.  And, referring back to the learned helplessness model that I'm such a fan of, it's hard to keep trying to fight the shocks.  Last night when Dave got home I took a long, hot shower and had cookies and wine for dinner, because I was ready to just give up.  (Thanks to the KIPP cookie exchangers for providing my dinner ;)  )

If you are lucky enough to not understand what it means when someone says that they're "fighting with the insurance company", or if you don't understand why it would be stressful to just make a few phone calls, I hope that the saga below will help to shed some light:

Background:
Maya gets a lot of therapy, most of which is through the state's Early Intervention program.  However, we also supplement with private speech & feeding therapy, which we pay for out of pocket.  Insurance reimburses us for about 1/3 of what we shell out (don't get me started on the additional expenses of having a child with special needs).  Once we have a statement (EOB) from the insurance explaining what they will or won't pay, we can take money out of our FSA (a special account that we pay into at the start of each year, tax free, and can use only for medical expenses).  Without those EOBs, our money is stuck in the account.  If we don't submit EOBs to use it, we lose it.

The Saga:
I submitted a bunch (60ish) claims back at the end of Sept. Some were processed, some just seemed to disappear (meaning that I never heard anything about them, whether they were approved or denied). I've now spoken to different representatives about these claims a bunch of times---each time "something" is wrong with them, preventing them from being processed at all.

Call #1 : The first time I called, they "didn't have the provider's name and address"---but when I spoke to a representative and explained that all of that information was on the receipts that I sent in she was then (miraculously) able to see it. She then submitted them for re-processing.

My thoughts: Hooray!  That was easy to fix.  Now I'll just wait a few weeks for checks to come in the mail.
  
Call #2: The second time that I called they said that the person who resubmitted them the first time did it incorrectly, so we had to re-do everything from the first call.

My thoughts: Argh!  It's annoying that I waited all this time thinkng that it was being processed!  Oh well, at least now it seems like everything is fixed, and I just need to wait a few weeks for checks to arrive.

Call #3: The third time they said that the problem wasn't the missing address information, it was that they felt like the therapist wasn't qualified to provide feeding therapy (because her letterhead says "speech pathologist"). I pointed them towards 2 other claims that I had submitted and they had paid. She agreed that it didn't make sense, and put them all through for re-submission, again. She said that she would mail me EOBs that said the claims were denied, so that I could submit them to the FSA.  This phone call took 47 minutes, as we had to individually identify each date of service and claim (it's a good thing I've learned to keep good records).

My thoughts: What the hell-o goes on at these places?  How is it even possble that there are so many issues with these claims?  I'm starting to suspect that things are done incorrectly intentionally so that eventually I will give up.  Or be committed to a mental institution.  It's a good thing this girl was so helpful, she'll at least get those EOBs out to us tomorrow so that we don't lose our FSA money.  If I don't get them in the mail in the next few days I'm going to call and check.  


Call #4: The fourth time I called, the person said that we couldn't get EOBs in the mail because our account was now paperless (I'm 100% sure that this is another stalling tactic.  We never changed our account to paperless.  I have statements that were mailed to me in Oct, but in Nov they started posting notices to our "online insurance account"--which I had never even heard of prior to this call.  WHAT THE HELL? ).   She also said that they would never agree to mail 36 EOBs without something in writing. When I offered to fax in something she said that wouldn't work.  Then I had a crying, cursing mental breakdown on the phone and got the supervisor :) I faxed over 50 pages (that I had previously mailed in) to the supervisor. She said that she would try to figure out some way to help.

My thoughts: IswearonallthatiisholythatifiknewwherethisofficewasiwouldbetherecampingoutwithmywhinytoddlerandchangingherdiapersonsomeonesdeskandsingingwheelsonthebusandrowrowrowyourboatallthelivelongdayIfyoupeoplemakemelosemyFSAmoneyIwillcallyou3tmesadayeverydayfortherestofeternity.


Call #5/6/7: The 5th-6th-7th times I called, the supervisor dodged my calls. 
My thoughts: Shocker.  I think they may be starting to realize that I've crossed the line from "Overwhelmed victim of this company" to "Angry and annoying client who won't. ever. stop."

Call #8: The 8th time that I called, the supervisor saw that all of the claims are in the limbo of resubmission (for the umpteenth time). She emailed the manager to see if there was a way to print EOBs for the ones that have been denied and send them to me.  I still don't think that this will help with th 36 claims that are in limbo.

My thoughts:  I'm coming to the realization that the "supervisor" does not seem to be much more capable of getting things done then the call answering folks.  But at least now I have a name, and I get to the same person each time.

Call #9 (today): Supervisor dodged my call

Call #10 (today): Supervisor said that her manager emailed her back, but it was a secure, encrypted emal so she couldn't open it.  So she emailed the manager back and asked her to re-email it but not in a secure encrypted way so that she would be able to open it.

My thoughts: Ok, now you're just making shite up.  There's not even a remote possibility that any of that is legit.

So, there you have it. In my humble opinion, the insurance company is deliberately giving me the run around, trying to wait me out. 

It's maddening. 

Literally.

And every time that I get out my notes and stack of papers to call, I think of one of my old favorite quotes (which you may have seen on the FB page):

"Courage does not always roar.  Sometimes it is the quiet voice at the end of the day saying 'I will try again tomorrow'.- Mary Anne Radmacher

And I guess that's what I'll do.

OH, AND THE 2010 HOLIDAY CARD GETS POSTED HERE TOMORROW!!! HOORAY!!!!

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.

Time slips away, and leaves you with nothing, mister . . . *

I haven't written since Monday?  Really?  Well, that's what happens.  Dave gets a week off from work, projects take over, time slips away, and the blog gets bumped down on the list of priorities.

We've been having a great week :)

We had some therapies on Monday and Tuesday, but canceled them all for Weds-Thurs-Fri.  3 days of blissful unscheduledness.  I'm sure that Maya misses her buddies, but it's nice to have the time off.    We've hung out with family (both sides), Maya's gotten to play with both sets of grandparents, 3/4 of her aunts & uncles, and 5 out of 7 cousins.  We've played, ran errands, and created another fantastic holiday card---coming soon to mailboxes nationwide :)

Oh, and we picked up these:

AHHHHHH!  (that's the angels singing) 

If your a real life friend of mine, or a regular reader, you might know that I have a thing with iced coffee.  I have 2 per day (ok, occasionally 3).  It has to be iced, has to be strong, has to be in a large (venti, whatver) cup.   A few years back Starbucks made these reusable iced coffee cups, which flew off the Starbucks shelves----and unfortunately, flew off of my desk at school, cracking mine straight down the side.  (Dave ordered a replacement for me from Thailand.  Seriously.)  Since then, we try to have a few back-ups on hand.  They only come out twice a year (holidays and summer) and don't last long.  So we grabbed 2 new ones this week.

And then, my fabulous sister-in-law brought me a blue one!  Blue! Someday I'll have all the colors of the rainbow.

And we even got this teeny tiny Christmas tree ornament cup :)  It's too cute (and perfect)!

(If you like iced coffee, a cup like this is really worth getting---it's double walled, so no water beads up on the outside of it.  More importantly, it's reusable (good for the planet).  AND, I just make a pot of coffee and then keep it in the fridge (in a Tupperware style pitcher) so it's cheap and always on hand.)

On the other end of the relaxed spectrum, this week we will be SERIOUSLY OVERBOOKED.  (That's in all caps because it's a scary, intimidating week.)  Maya will have her full schedule of therapies, plus a pediatrician appointment (2.5 year check-up) plus 3 evaluations for CPSE.   I'll explain what that means some time this week, but for now just know that it's stressing me out.

So we will be completely booked, from breakfast until dinner, nearly every day this week. 

Monday: (breakfast/walk Parker) Therapy A: 8:30-9:30,  (walk or dog park, lunch) Therapy B:11:30-12:10, (nap) Therapy C: 3:15-4, (snack) Therapy D: 4:30-5:15 (dinner, play, bed)

Tuesday: (breakfast, dog park) Therapy A in Manhattan with travel time 9:45-12, (nap), Therapy B: 3:15-4, (snack, walk in lobby) Therapy C: 4:45-5:30  (dinner, play, bed)

Wednesday: (breakfast, dog park) Therapy A in Manhattan with travel time 9:45-12, (nap), Therapy B: 3:15-4, (snack) Psychological Evaluation 4:30-?  (eat, play, bed)

Thursday: (breakfast, walk Parker) Music class: 9:30-10:15 (walk home, snack, play) Therapy A: 11:30-12:15, Pediatrician 12:30, (nap, walk Parker) Speech/feeding evaluation 4-? (eat, play, bed)

Friday: (breakfast, walk Parker) Therapy A: 8:30-9:30, Psychological evaluation 10:30-? (lunch, nap) Freedom!

I'm sure that I'm not alone on this front---sometimes it's really hard to explain to people how we "don't have any free time" even though Maya's little and I'm a stay at home mom.  Our free time really exists in 30-60 min blocks, which isn't quite long enough for a play date or lunch or whatever.  It can be really isolating.

So those are all of my random, strung together thoughts on the past week.  Oh, and I should include this, which was our Facebook status on Thanksgiving Eve, in case you didn't see it:

A year ago today we were having Maya's brain MRI done. This year we had breakfast and dinner with family, ran some errands, and enjoyed a therapy free day. Sometimes a year makes a big difference :) Happy thanksgiving, everyone.


:)
Hope you all had great Thanksgivings!

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!

If you watched LOST, you'll get this. If not, you should really get the dvd box set. It was awesome.

The rabbits live on our terrace, in 2 separate cages (so as not to induce possible bunny boxing matches, which had occurred when we tried to cohabitate 2 prior bunnies).  Dave spent time cleaning and rearranging the terrace yesterday and decided that it's time for the 2 rabbits to live together in the ginormous hutch (thereby simplifying cage cleaning and giving us more space).  He came back into the apartment and filled me in.

Dave: "They're going to work out just fine"

Me: "Really?  How can you tell?"

Dave: "Well, I just told them.  Live together, or die alone."

(Although if you reflect on it, the statement doesn't totally make sense, it was enough to make me spit out my coffee.)

Live together!  We choose "live together"!

In other news, I had a panic attack today (tears and all) about my failure in trying to teach Maya shapes and colors.   Or much of anything lately.  I've been so focused on the PT work, and the feeding/speech work, that I feel like I haven't been doing many cognitive types of exercises or direct teaching.  Since her receptive learning-ness (that's a technical term) seems to be her biggest strength, I had a total meltdown over how we'll never get into preschool (and therefore elementary school, middle school, college, or be successful at life) because I haven't been mentally stimulating her enough.  Luckily one of the therapists could tell by my manic-sounding text message that I was out on a ledge, and she called to talk me down.

(This may or may not have been triggered by the fact that I'm going on a preschool tour this Friday. Yeah, that's probably what did it.)

Amsterdam International

To fully get this post, please read (or re-read) Welcome to Holland before starting.  Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland."  It is supposed to explain what it's like to have a child with special needs.  It's short and sweet. 

It skips everything.

While "Welcome to Holland" has a place, I used to hate it.  It skipped over all of the agony of having a child with special needs and went right to the happy ending. 

The raw, painful, confusing entry into Holland was just glossed over.  And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time.  And it would sound like this:


Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved

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.

Nap time

So I tried to start writing an update, maybe something that would evolve into wittiness, just jotting down thoughts to clean up later.  But then I decided to stop pushing for a creative update (which was just another thing on my to-do list) and just be real.  In italics, my intial drafting . . . following by my current state of frazzled-ness in bold, because I feel boldly frazzled.

Soon to come---a new video! (just waiting to be uploaded tonight)

Here we are, mid-nap time, and I'm trying to catch up on 53 things to do.   I finally have a chance to sit and write, and all of my interesting thoughts have flown out of my head.  So now I'm thinking about Writing 101---Who, What, Where, Why, When and How . . . let me give it a shot:

What kind of dog is that?  We get asked that nearly every time we take Parker out.  He's the magical mystery dog---absolutely adorable and I think that secretly everyone wants one just like him.  Many people just start a conversation by venturing a guess "Goldendoodle?" "Labradoodle?"  . . . but we've only had 2 correct guesses (and weirdly, one of them was from a 6 year old girl----future Dog Whisperer, perhaps).  Once we explain that he's a standard poodle, and just a puppy, we get "Whoa . . .he's big for 3.5 months!"  (Yikes! Tell me about it) The first week at obedience class, Parker was the same size as two other puppies.  This past week he was the biggest by far!

When  are we ever going to have free time again?  I just got off the phone (literally, the call interrupted my writing) with our new Early Intervention speech/feeding therapist.  And with that call, I had to fit 4 new therapy appointments per week into our already bursting schedule.  I feel stretched to the max.

Well, that writing experiment was a massive fail.  My phone keeps ringing, I'm not feeling entertaining, and I'm just stressed.  Here's what's really on my mind:


-a dear old friend going through a tough situation, and I feel like a little piece of my heart is with him.


-another friend's baby in surgery today, and a little pit in my stomach for them as they deal with the first time he's put under (I remember that so well with Maya's adenoids)


-a jumbled, messy apartment that I just can't seem to conquer---I'm stitching up one end as the other is unraveling.  The floors have to be cleaned constantly now, we leave the terrace door open a lot for the dog and all kind of dirt blows in.  There is laundry to do, laundry to fold, stuff to bring down to storage, I need to clean out the fridge, etc. 


-cooking that takes too long.  I can make a mean vat of tabouli that lasts all week, but the chopping and dicing and herb washing and more chopping, etc, etc takes forever.  I did an hour of prep on it earlier, but there's probably another hour left.  And I'm loving grilled veggie and goat cheese sandwiches (drizzled with olive oil), but the grill pan is so impossible to clean that I'm dreading grilling the marinated zucchini.


-how can I make sure I'm working enough with Maya . . . what new things should we be learning, etc.


-how can I make sure I'm working enough with Parker . . . what new things should we be learning, etc.


-how can I balance Maya and Parker?  Sometimes life would be a lot easier if I just took her to the playground . . . but then I feel like he should be there too, to get used to the smells and sounds and running kids, etc.  And then I take him everywhere, but get frustrated because we can't run in to the post office, grocery store, etc, because he's with me.  So it's a juggle .  . . I love having the two of them, and wouldn't trade it, but I'm a novice juggler right now.  I'm sure it will get easier.


-and now more appointments.  Sigh.