Every so often it's time to cry again

Maya arrived home the other day with one thing on her mind: the school bus.  She was saying “school bus” with her talker, she pointed to the picture of the bus that hangs in the alphabet hallway (with the letter B), she told me “buh!” several times, and she kept demanding that we sing “wheels on the bus.”  Her method of demanding was very cute--she made sure that she had our attention and then rolled her arms round-and-round, just like in the song.  We sang, she acted it out, the song ended, she was delighted and wanted more.  Good times.

But I didn’t know why she was so suddenly enamored with wheels-on-the-bus, and it nagged at me.  Was she excited to be traveling on the school bus again after her week off?  Were they reading about a bus at school?  Does someone else sing her that song?

It was obvious from the way that she lit up when we started to sing that she was making some connection, and she couldn’t tell me what is was.  So after she went to sleep I emailed her teacher, Laura.  First, I let her know that Maya was newly obsessed with wheels-on-the-bus, and that spinning her arms translates as “let’s sing WOTB!”  Then I asked if they had done anything with that song at school.

I got the reply the next morning (I’m paraphrasing): That’s too funny!  Actually, I sang it to her yesterday at school, and then we all sang it later as a class!

I smiled reading it, understanding how much Maya must have enjoyed acting out the song with her friends, and how excited she was to keep doing it at home with us.   Then I started to cry.

God, how I hate that she can’t talk.

I hate that in order to figure out that they sang wheels-on-the-bus we had to go through a crazy multi-step guessing game: Maya acts out round-and-round, I guess that’s she saying wheels-on-the-bus and start to sing.  She lights up, so I know that I’m right. I sing and she does the motions and she is more delighted than usual, so I take her excitement as a clue that something more is going on.  I email the (luckily cooperative) teacher, who doesn’t mind my guessing games, and wait to hear back to gather more clues.  Finally, I find out that she sang it at school, and now I wait for the rest of the day to go by so that when I see her again I can say, “Maya, I talked to Laura!  She told me that you sing wheels-on-the-bus at school!”  Mystery solved!  High fives all around!  24 hours from start to finish.

Or . . .if she could talk . . . she could say “Wheels on the bus!” and we could sing together and I could say “Did someone sing that today at school?” and she could say “Laura sings wheels on the bus!” and then we could have a snack.  4 minutes, maybe, from start to finish.

I hate that I might be missing other hints that she tries to give me, other things that she wants to share.   I speak for her constantly, making connections and guessing.  When she enthusiastically points out a whale in a book, I say “Oh,  a whale!  That’s like the big whale that we saw at the museum!” . . . but what if she’s pointing at the whale because it’s blue? Or because a boy in her class wore a shirt with a whale on it today?  Or because they’re studying the letter W at school and read a whale book earlier this week?  How can I keep talking for her, when I’m really just taking my best shot at guessing what she’s trying to say?

I hate that it’s so hard for her.  And for us.  And while I love her easy (well, mostly easy) personality and I’m eternally grateful that she doesn’t seem to sense the unfairness of her situation yet, I’m so angry on her behalf.  I resist the urge to get down on my knee and look her in the eyes and say “this isn’t fair to you, you know.  Other kids have it so easy and you have to work so hard and even then sometimes I just don’t understand and it’s not your fault and I can’t do anything to help and I’m sorry.”  I try to be happy that she (mostly) doesn’t care yet because I know that someday she will and that will be another crushing thing.

I hate that for us to communicate there is a multi-modal full body exchange that needs to happen.  I hate that I have to guess.  I hate that I’m probably wrong a fair number of times and I don’t know it.  I hate when she gets angry and cries/whines/yells at us (which happens at least once a day) because we don’t understand and she doesn’t know how to make us understand.   I hate that here I am again, three years into all of this stuff, writing with a crumpled pile of used tissues on the floor next to me. 

Every so often it's time to cry again.

At least now I have three years’ worth of experience behind me . . . enough to know what happens next.  I’ve sang this song before, many times now.  I will cry angry tears and then they will change to sad tears and then I will be numb.  And when the numbness fades I’ll take the energy that’s beneath it and, with new gusto, throw myself into working on communication stuff.  Oral motor exercises and making Maya request things with sounds and working more and more closely with the talker and Speak for Yourself so that it will continue to become increasingly incorporated into the way she initiates communication.  We have a lot of tools and a lot of knowledge and have to keep doing the hard work of making it stick.  There will be productivity and progress until I reach a new breaking point, and then we will start again. 



Postscript: I finished writing this at 2:55pm. At 3:15 Maya came home and we got the mail, and a prototype keyguard for the Speak for Yourself app arrived, which is fantastic and will definitely help with Maya’s communication accuracy via the talker.  At 4:10 I became sure (after a few days of debating) that I’m starting to feel the baby kick.  So, I guess sometimes you get lucky and the time to cry passes more quickly than you would expect. 

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.”

I'm no writer, but this guy is

I've tried three times to start this post.  The first time I even typed out something that was a few paragraphs long, then I deleted it.  Ironically, I'm trying to write about how I'm not a writer. 

This blog was started to fill friends and family in on my pregnancy, then to share pictures of Maya, then to also share medical stuff as it unfolded, and then I added some of my thoughts to it.  The things you read here sound like my thoughts . . . I'm informal, I don't follow grammar rules (due to a combination of simple ignorance and willful ignoring), and I have a tendency to-do-this-thing-with-the-dashes when I don't know how to make a rambly thought not turn into a run-on sentence that leaves a reader lost in the middle, thinking "huh?". 

I'm unpolished.  And often I look back on posts and think "Argh!  Why didn't I use a different adjective there?  Or add in a few sentences about xyz?"

Every so often I come across a blog post that inspires me with it's ability to get things out in a simple, clear, vivid and compelling way.  And so it was when a friend (Thanks, Kris!) sent this my way last week.

This post, along the lines of "spread the word to end the word", is fantastic.   (It also makes my humble post on STWTETW day look, well, mightily inferior, but que sera sera.) 

Please take the time to read it.  The author puts into (beautifully crafted) words the exact sentiments that I, and many others, feel.

If you have a family member with special needs (or work with people with special needs) and hate the word "retarded", this post will have you nodding and saying "Yes! That is how I feel.  Thank you for putting it in better words that I can."

If you're of the I-hear-what-you're-saying-and-I'm-sorry-it-hurts-you-but-really-it's-just-a-word mindset, I really and truly believe that this post will give you a type of insight and perspective that will be eye opening.  


(Just in case you can't see the hyperlink on your screen, here's the direct link to the post, on Robert Rummel-Hudson's blog, Fighting Monsters with Rubber Swords:  http://www.schuylersmonsterblog.com/2011/05/just-word.html)

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 :)

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!

Learned Helplessness & Early Intervention

Warning: The first three paragraphs here are kind of science nerd-y, but I tried to keep it short, sweet, & simple, and I think what I'm getting at here is really interesting from a psychology standpoint.

The Theory:
As you may or may not know, I was a zoology major in college.  I took a good number of ethology (animal behavior), behavioral neuroscience, & neuropsych classes . . . classes that looked at animal behavior and animal psychology (which, as it turns out, is very very closely related to human behavior and human psychology). 

There is a very interesting model of animal (and human) behavior called "Learned Helplessness".  Basically, experimenters exposed dogs to a series of shocks.  "Group A" dogs could turn off the shocks by stepping on a bar, "Group B" dogs couldn't control the shocks.  Later on, the dogs were put in a new situation where they could all control the shocks by jumping over a little bar and getting away from them.  "Group A" dogs jumped away, but the "Group B" dogs just laid down and whimpered, taking the shocks. 

Since the dogs in Group B had learned that their behavior didn't help their situation, they just gave up.  They  didn't assert themselves.  They were depressed.  (Human tests have found similar results.)

I've come to the realization this week that many bureaucratic systems (Early Intervention, filing claims with insurance companies, etc.) can set up the same sort of learned helplessness situation----by making people feel helpless, like they have no control over the outcome of their circumstances and no power to accomplish anything, many eventually become depressed and just give up.

The Personal Connection:
This past week, I was irate at dealing with the bureaucracy of the Early Intervention system.  I was take-my-plates-out-on-the-terrace-and-shatter-them-one-by-one-while-primal-screaming angry.  And, honestly, I'm still pretty ticked.  Here's the backstory:

I've been trying to get Maya leg splints for 10 weeks. TEN weeks. The girl can't stand. She can't walk. She needs splints.  Initially, I was worried to call too often to follow up on the paperwork because I didn't want to annoy anyone who would have the power to "lose" my file, causing a big delay. 

Causing a big delay?---Ha!  Here we are nearly 3 months later, and I'm not afraid of getting on anyone's nerves anymore.  Now I'm trying to get on people's nerves like it's my freaking job.  I would be in the office, singing "99 Bottles of Beer on the Wall" if I thought it would help.

If you've been lucky enough to never deal with infuriating bureaucracy, here's my list of phone calls from Monday:

10:15: Called Service Coordinator work line, left message

2:00: Called SC's cell phone (which she prefers to be reached on), left message

2:30: Called SC's supervisor, left message

4:15: Called SC's work line again, left another message

4:48: Called SC's supervisor again, he answers and says "Oh, SC is here, I think she has information for you" and transfers me.

She's like "Oh, I've been meaning to call you back". And then the big update is that she finally spoke to the person who has to sign off on our stuff and she said "Hopefully we'll get it by Friday, if not I'll call on Thursday to check on things."   Thursday.  Thursday?  If she calls Thursday, the signer person won't even get the message until Friday afternoon.  And no way they'll call her back on Friday.  So another week will go by with nothing.
AARRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGHHHH

I got the number to start calling myself, but in a ridiculous twist that unfolded this afternoon, it turns out that I've been leaving messages for the wrong person . . . I was given the number for the person who signs off on our speech papers, not our assistive technology papers.  So tomorrow I'll start calling the new number.

How can this be so hard.

My effingg kid can't walk. I need these splints. Sign the papers.

I totally understand why people lose their minds and shoot up offices.
(I'm not really threatening violence, please don't report me to any authorities :) )


In Conclusion
I'm a totally capable, savvy, intelligent woman---but dealing with this system has made me feel so useless and depressed that there are many days where I have thought "why bother calling. It won't matter anyway."

And if you're thinking "Oh, if it was me, I would just storm in there and demand this and blah blah blah" well, let me say, no you wouldn't.  You would quickly see that it won't get you anywhere, and actually, it would close doors in your face.

Plus---think for a moment about these calls I'm making.  I'm trying to get splints so that Maya can stand and walk.  Everyone who is in Early Intervention has kids with specials needs who are younger than 3.  So these people trying to make the calls?  We're pretty much near the end of our emotional rope a lot of the time. 

We already feel helpless, because we couldn't control whatever circumstances have led to our child's disabilities.

We are already angry and frustrated, feeling like we try to help but things don't work.

We oscillate between "I will fight with everything I have until you give my kid what she deserves" to "I'm just so tired of fighting".

-or-

We oscillate between "I will jump and push levers and fight for my ability to not get shocked" to "Sometimes it's just easier to lay down and whimper and wait for it to pass".


Oddly, making this connection (my emotional roller coaster with this situation, and it's perfect fit with the learned helplessness model) has really let me detach a little bit from the process, thereby giving me the calmness to just keep calling, patiently and matter of factly.  For now anyway.  I'm sure I'll get frustrated again :)

So that's where I've been.  And now , here are some totally random pictures from the weekend, just for fun:

Waiting for Daddy in the lobby of the building (he took this pic)

Shopping is so exhausting.   Sometimes I just need a break.

In light of these recent stressors, I've needed to up my caffeine intake.