I will not be her limiting factor

At the risk of becoming a one trick pony, I'm going to hesitantly start another post on communication.

Exactly a month ago, I posted about finally making the leap and learning how to use BoardMaker.  The timing wasn't accidental.  Maya had been toying with the iPad for the past 8 months or so during her therapies.   I had made a few picture cards here and there, but without much direction.  As the summer rolled on I told myself "When school starts, we will get a system in place".  It didn't seem to make much sense to create a system on my own when preschool (filled with lots of people-who-know-how-to-communicate-with-nonverbal-little-kids) was right around the corner.

School started.  I waited for her to find her footing.  I spent a few hours learning BoardMaker.  I met with Maya's teacher and speech therapist and saw the types of boards they were using at school.  I made some boards at home.

I puzzled over the fact that having a finite number of words available meant that I was chosing everything that Maya was able to say.  I hated that.  It didn't seem fair.

I made keep making the Word Book.  With it, Maya will flip through the pages, pulling off words and handing them to me, eyes lighting up with delight when I say "alligator?" or whatever word she's thinking.  She understands that the book lets her get her thoughts out.  She plays with the PECs (picture cards).  She's starting to learn how to point her way through "I want" sentences.  It's exciting-beyond-words that she's able to tell us stuff.

But it's killing me.

Something about seeing her latch onto this book so quickly (and I really mean "latch on"--literally and figuratively---she's taking the thing in her crib at night . . . don't take my words away, mommy, I might need them tonight) is simulatenously delighting me and breaking my heart.  She's so young and teachable and interested, and I've realized that the limiting factor is her communication isn't her . . . it's me.

Sure . . . it's her mouth's fault that she can't speak words, but it's my fault that she can't communicate.

She doesn't sign much . . . because I haven't followed through with continuing to teach ASL, since her signs are garbled and while I understand them, others won't.  So I just kind of gave up on signing, I guess.  It wasn't a conscious decision, it just  . . . happened.  She started making sounds and gesturing and taking my hand to lead me to things and most of the time, I understood her.  So it was easy not to use PECs regularly, or any real system----she understood me and I understood her and it led to kind of a lazy complacency. 

Now she's starting to use the PECs, and starting to use the iPad more (it's taking me time to upload pictures and format the program, but we're using it in baby steps) and she's learning.  She's interested.  The learning is slow, but it will come.

I give her something new, and she tries to learn it. 
 
  
I'm the limiting factor. 



If I don't make-it-for-her/give-it-to-her/customize-it/set-it-up then her communication is limited.  And it's limited because of me.


This line of thinking . . . well, it's not so good.  I've been throw into a kind of emotional spiral over this . . . whatever I'm doing, I don't feel like it's enough.  But it's certainly enough to keep me in front of the computer day and night, googling and searching and emailing.  It's enough to cut into my sleep.  It's enough to obsess over.  It's an unhealthy place to be.

And then I realized that I can turn some of this negative energy from self-loathing into just plain old loathing (and not that any loathing is ideal . . . but of those two, I'd take the latter).  I am angry at "the system" again. 

I want Maya to get a communication device.  A real one, a big one, one that she can gently be exposed to now and grow into and use for years to come.  I want it soon. 

I want it because Maya deserves it.

But, somehow, it's not my choice.  I can refer her for evaluations (done).  The evaluators will recommend the product that they think is best for her (which I've found to be a gross misrepresentation of her ability).  I can protest . . . but, well, you know . . . I'm "just a parent".  I'm not the professional.  How could I possibly know more about this stuff than the professional?  The device that she receives from the Board of Ed will most likely just be the one that the professional recommends, and then we wait while a year goes by.  A year!  In a year I think she could make some very nice slow and steady progress with a device.

I am educating myself.  I am emailing people-who-know-things about augmentative communication*.  I am leaving messages with representatives from the big companies*. 

I am thinking that we will likely try to pursue getting a device privately, because why-should-Maya-have-to-wait-for-the-Board-of-Ed-to-believe-that-she's-ready?   I believe that's she ready.  Or at least approaching ready at a speed of faster-than-a-year-from-now.


   

I will not be her limiting factor.




And I won't let the professionals** be her limiting factor, either.


 


And, just because I can't resist sharing the cutenes:

Roar!!!!  This little dragon can't wait for Halloween.

*To this end, if you know anyone who knows about augcomm, has a child with a device, works in assitive technology, etc, please email me: uncommonfeedback@gmail.com 

**Just to be clear, "the professionals" are not the people at Maya's preschool.  We love the people at Maya's preschool.  "The professionals" are the city evaluator people/BOE.

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.

News & new videos

Just got around to uploading some videos from my phone.

Here's one from music class last week.  Maya's getting girly, I think.  She likes bracelets, sparkly shirts, and hair clips, unfortunately for this girl:




Here's a bit of Kristi Yamaguchi reading the beginning of her book, while Maya watches:



And the news?  We got an IEP date!!!!  It's Friday, April 1.  That's only 2 weeks away!  I am tentatively so excited to think that the preschool placement could be nailed down in 2 weeks . . . what a load off.  I may have a full head of hair come summertime :)

I think Maya will be happy too----here's a video I took in the elevator on the morning that we went to the school visit.  She's going to love school.  (You need your volume on to fully appreciate the cuteness here)

A very long retelling of Maya's preschool playdate

The play-by-play
We went to a little waiting room (with a big fish tank and some toys) to wait with another family who was also there for their playdate . . . but shortly after Maya was freed from the stroller she wanted to go explore.  I would let her toddle into the hallway, then grab her up and bring her back to the room.  The school director (which it seems is preschool talk for "principal") and head teacher came in to meet with us.  The school director started speaking with the other mom, and the head teacher started chatting with me.  When she realized that Maya wanted to wander, she said "Let's just follow her and talk" and Maya was happily allowed to roam the halls.  She stopped to peek in doorways, checked out the art on the walls, etc.

Eventually we went into the classroom that Maya will (hopefully, hopefully, hopefully) be in next year.  She pointed at the moon and stars that were on the windows (she loves to point out the moon in the sky or in books) and touched their toys and bookshelves.  She went over to the kids and checked them out.  She walked into their little coat closet area.  People were shocked that she's only been walking for a few weeks :)

Eventually we meandered back out of the classroom and into the hallway.  I continued chatting with the head teacher, and another teaching supervisor joined us.  Maya was totally amused by the hallway PT sessions (the hallways form a big square, and therapists would walk by with kids pulling wagons---or in wagons, on tricycles, etc) . . . once a little class walked by and Maya tried to follow them down the hallway :)

At the end of the playdate, we went back to the fish tank room and I spoke with the school director for a bit.  I gave them copies of the evaluations that I had, we talked about what happens next and that was that.

The stuff that matters
1.  Maya loved it there.  She's such an observer . . . whenever she's in a new place she just wants to see every piece of it, examine everything, before she shows any interest in the people.

2.  The people there totally "got" her right away.  First, every adult who walked by (and some who just poked their heads out of doorways) were all like "Oh, she's so adorablllleee!"  (obviously).  :)  But more than that, they could see her intelligence pretty quickly.  They could see her responding to the things I said ("Wipe your chin, please" "Let's walk back to the room with the fish tank" etc) and trying to tell me things too (pointing at the moon and stars, signing "eat", pointing and babbling for me to put her down).  The teachers said things like "Look at how observant she is" and "She really understands everything you say".

One of my biggest fears about school was finding a place where they really know that there's more to a kid than meets the eye----Maya will wander with her tongue protruding and drool dripping down when she's in a new place.   She's intently focused on the stuff around her and looks like a total blank slate . . . but even though she looked totally glazed over for half the visit, they could see.  They understood.  They won't underestimate her.

3.  They know how to teach everyone.  The school runs the gamut from children who are totally "typical" to children who are not independently mobile, nonverbal, etc.  They have dealt with eating issues, assistive technology, intensive PT, etc.  I have confidence in their teachers and therapists. 

4. I like their classroom philosophy.  Since they teach children with such a range of needs, they have a bunch of classrooms.  If things work out, Maya will start in the smallest classroom (where there are nearly more adults than children in the classroom, with a 6:1:2 ratio, and paraprofessionals/aides as well).  I love that the teachers and school director all said (independently) "Let's start her in X".  They often move kids into other classrooms, if they feel like they would be able to work in a larger room or with less scaffolding or whatever . . . and I like that plan (they start by moving the kids for an hour a day, and progress from there).  I also love the fact that they want her in the smallest room to start with . . . although I guess some parents might feel badly about that (maybe disappointed that their kid is one of the "neediest" at the school?) I think it's great because I want her to feel successful at school, and I think that a larger room would be overwhelming right now. 

5.  I like the vibe.  What can I say?  I'm an energy-reading type of person.  I felt great about all of the people that I spoke with----they all totally love the kids, which was evident in every hallway interaction. 

6. We were on the same page.  If I could have picked her classroom for next year, I would have picked the one they want her in.  Similarly, when I gave them the evaluations with the warning "These aren't really that accurate, just so you know" I kept my ears open.  I could hear them (the 2 teachers and school director) glancing through them saying "This doesn't make sense.  She clearly understands mom, and mom said she even knows some shapes and colors."  They picked up on the stuff that bugs me the most (that her receptive language on the evaluation was listed at basically none) right away.   The school director struck me as very kind, and slightly blunt . . . just like me!  I think that the school is a good match for Maya, and the adults aare a good match for me.

What happens next
We like the school, the school likes Maya.  They don't legally "hold spots" for kids, but right now they do have spots open.  Our meeting can't happen before April 15th (in terms of signing papers to hold a spot for Sept, that's the first day it can happen) and must happen before Maya's 3rd birthday (May 30).  Hopefully the guy will agree that it's a good fit and will approve the placement, and then during the meeting he'll call the school on the phone and say "Do you have a spot" and they'll hopefully say "Yes" and we'll sign and I will be immensely relieved that this is done.

The stuff that matters the most
My friend has a child that currently attends this school, and a few months ago she told me this story.  (Her son has just started to walk with a walker, but does not walk independently.) (I'm using italics to indicate that the story is told from her point of view---because it's easier to write it in the first person---but the words are mine, this isn't copied from an email or anything.  And the story is shared with her permission :) )

Last week we got a notice home from the school about an after school soccer program, which I tossed, seeing as -child- doesn't walk yet.  Then a few days later when I picked him up from school, the teacher said "He did great at soccer today!"  and I was like . . . "Um, what?"

Turns out, soccer was also happening during part of the school day.  And when I asked how my kid was possibly playing soccer, the teachers were all nonchalantly like "Oh, I just hold him on this side . . . and she holds him on that side . . . we count '1, 2, 3, kick!' and swing him.  He loves it!

And that's when I was like "I want Maya at that school."

That's possibly the sweetest story you've ever heard, right?

And that sums up the vibe---a school run by intelligent, creative, loving adults who I know will challenge Maya (and assist her) to learn and do all kinds of great stuff. 

If we get in.

Shut up, just shut up, shut up*

Subtitle:  How to Be a Productive Member of Society a Group Preschool Tour

I've been to visit a few preschools recently, and frankly, I'm shocked at the lack of social intelligence that many adults have.  Admittedly, I have a low tolerance for people in general (I smile politely, but on the inside I roll my eyes) . . . but the questions that I have to sit through at these things would drive even a nice person over the edge.  So here's an education on being a productive, non-annoying, contributing member of a group info session and tour, broken into 3 easy lessons:

(FYI: While I'm writing specifically about a special needs preschool tour, these general guidelines are so universal that I think they could even apply to a normal college tour)

General Information:
You're playing the long game.  The "Group Information Session and Tour" is only Step 1 of the many step process of "getting in" to a preschool.  If you're interested in a school, Step 2 is generally bringing your child back for a playdate.  At this time, if you're still interested, and the school is interested in you, you can ask every question that you've ever had.  But the group tour?  It's only Step 1.  Step 1 is for broad, general information.   Pace yourselves.

The players:
Have some social intelligence, folks.  This is not you, alone, in a room with a school director.  There are other people here, and while you don't have to be their buddies, it might do you good to consider that everyone who is there has their own perspective, and they aren't there to hear about you and your kid.  Your company will probably include:

-Parents who realized quickly that this school is not a good fit for them, but feel obligated to politely stay until the end.
-Parents who are sure this school is the perfect fit and are excited to come back for a play date, and are waiting until then to ask a million questions that are specific to their child.
-Parents who are visiting a special needs preschool for the very first time, and are feeling the emotional blow of realizing that this is where their child fits.
-Parents who have been on 8 other tours this month, and just want to get the facts and get out.
-Parents who need to get to work.
-Parents who are worried about how their child is managing with the babysitter.


Lesson 1:  Questions during the Infomation Session:
The school director/session leader is trying to make a cohesive presentation---they have important things that they want to tell you about their school, and want to address the most common questions that they get. But they can't get through their presentation because you. keep. interrupting.

Asking a few general questions is fine (after the body of the presentation).  We are all here to get information about a school's practices and policies, and you may have questions that are appropriate and useful. 

However:
-if you have asked 8 questions and no one else has asked any, it's time to stop. 
-if the school director/tour leader starts to give you a sideways glance when your hand goes up, instead of pleasantly calling on you, it's time to stop.
-if you feel the need to say "Just one more quick question", then you're already apologizing for monopolizing the time, and you need to stop.


Lesson 2:  Dumb Inappropriate questions
Example 1:  We are in an observation room (the classroom has one-way mirrors and so we're in a mini-room where we can see and hear (through a microphone system) the classroom, but they can't see us).  In the corner of the classroom closest to us, a teacher is handing out toys cars from a basket, saying "And Tommy, this car is for you.  Do you know what color it is?  It's blue!" etc.

Mom in my group:  "Question---I notice that the teacher is selecting the cars and handing them out to the children.  Now, I'm just wondering, would there be other times when the child is allowed to pick their own car from the basket?"

Tour leader:  (brief pause, opens her mouth to answer) "Well, there might---"

Mom in my group: "I'm just asking because my Joey loves playing with cars, but he really prefers the ones that have the big wheels on the bottom.  So I want to know if he would get a chance to play with them, or whether he would just have to have whichever car the teacher gave him, you know?"

Me (on the outside): (turns away from the group so no one can see me stifling a laugh)

Me (on the inside): Seriously?  Are we really spending time discussing the intricacies of the school's toy car distribution practices?  Please shut up.  I don't care about what type of car Joey likes.  I'm betting no one else in this group does either.  And I don't care how they hand out their cars---this is a great school, they clearly know what they're doing, they don't need parental micromanaging input on how to best pass out plastic cars. 

Example 2: We are in an empty classroom, looking around at all of the cute little art things, their daily schedule, etc. 

Mom in my group:  "I notice that they have play-doh here.  Do they use that a lot?"

Tour leader:  (Gives some answer about art time)

Mom in my group: "Oh, ok.  My daughter Ally is just really starting to discover play-doh and work creatively with it, but she only wants to use her hands and not the utensils.  Would that be something that they would work on, encouraging her to use the utensils?"

Me (on the outside): (turns away to stifle a laugh)

Me (on the inside):  Seriously?  Our kids are 2.  "Discovering play-doh and work creatively with it" makes it seem like you think she may be the next Michelangelo.  She's probably squishing it, shoving it into the container, and  eating it.  I'm sure these teachers, who work with 3-5 year olds all day, have a great system for play-doh time, and a bucket of play-doh appropriate "utensils".  They're professionals, they know how to help kids with the play-doh.  (Eye roll)

Lesson 3:  How to decide if your question is "Group Tour Appropriate"
Helpful questions are general questions that could apply to more than one child (in other words, it's not all about your kid).  Some examples:  Are you able to handle children who need support walking?  Do you have experience with assitive technology for communication?  Are any of your speech therapists PROMPT trained?  Those are some questions that could pertain to my kid, but also might provide helpful information to others in the group.

Need help figuring out if your question will turn you into "that mom"?  Here are some self-check questions:

-Is it too specific?  (Like the car distribution question)  If yes, then rephrase:
"Will Joey get a chance to choose a car with big wheels?" can easily turn into "Do the children get any choice time to play with the toys in this area?"   Win-win.

-Are you using the question just as a vehicle to share tidbits about your child?  (Like the creatively working with play-doh question)  If you want to start your question with a story ("Mary was playing with that same toy the other day!  Would her class play with it here?") then it might not be necessary.  You don't need to sneak in cute information about your kid to the tour leader.  This isn't "The Bachelor", folks---no one's getting a rose at the end of the tour.  We already established that Step 2 is to come back for a playdate----save your stories for then.

-Is this question really going to help you decide whether this school is a good fit for your child?  Really, if they tell you "No, they don't get to choose their own toy cars" are you going to wave your hand, say "Ok, we're out" and leave the tour?  Do you really even care? 

-Are you forcing your agenda?  If you ask 3 questions about ABA (or PROMPT, or music therapy, or time outs or whatever thing you have in mind) and are repeatedly, gently told "That's not really our thing here . . . we chose to instead address things this way . . . " then get the message.  If you're still unclear, follow up with the school director in a one-on-one conversation.  If you keep saying "But Marcus really benefits from a structured hierarchy of stickers", you look foolish.  Again, you're at this school because you've heard good things . . . you either need to get on board with their methodology or find a better fit elsewhere.  There may be room for compromise, but the group tour is not the place to hammer out those details.

-Is it too specific for Step 1?  We're all here to learn the basics about this school.  It's not important that I learn about their snow day policy right now, or whether they prefer lunchboxes or lunchbags.  These are things that you only need to know once you're child is coming to the school.  These are Step 3 (or maybe even Step 4) questions.  Again, pace yourselves.

-Are you beginning to get death looks from other parents?  Are people sighing loudy?  Pointedly checking their watches?  Take the hint.


In Conclusion
Looking at schools is overwhelming, and nerve-wracking.  Each of us wants to find the best possible fit for our child.  We all have questions and concerns, but I don't care too much about most of yours and you probably don't care too much about most of mine, either.  So let's agree to listen to the presentation, ask general questions, and save the detailed stuff for later.  Thanks.

(title quote is from the Black Eyed Peas)

You gotta fight (!) . . . for your right (!). . . to party (?)*

My new books arrived in the mail today . . .

. . . watch out, Mr. "You don't have the right to that, I only have to give you a school placement." Now two of us will know the laws.

Or at least one of us will.

Come to think of it, you seemed confused on some of the details. I could bring them to the meeting in case you need a refresher.

:)

Also, I put up a new poll.   Be interactive, chime in---it only takes a second (or two), and it makes me happy to see votes come in (you know, like there are really people out there).

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!