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.”

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!

I can't come up with a title. But there are videos, so you should read it anyway.

Let's start with an Amsterdam International update.  Since Tuesday night, we've had 2,500 page loads.  Two thousand, five hundred.  That's a friggin' lot.  Also, 182 people have shared the link on Facebook.  Wow.  Keep spreading it around, folks.  I love the idea that it's reaching people who may really connect with it!

I've been spending all of my time working on emailing people and spreading it around, so Maya's been on her own.  Turns out, when left to fend for herself, she gets into trouble.

Example 1:  She chipped her tooth (The upper middle one on to your right.  The very bottom right corner of it is gone.)

How?  I have no idea.  That's the kind of mom that I am . . . my only child breaks a tooth and I don't even know when it happened.  Where's my Mother of the Year plaque?  (In all seriousness, we think it's because she keeps tapping things on her teeth---her OT had to confiscate a set of markers the other day.)

Example 2.  She taught herself how to climb on the coffee table because I wasn't there to help her reach her toys. 

You're probably thinking "Man, that must have been so cute.  I wish there was a video."  Well, wish no more:

(My dad was here for a Maya playdate, that's him cheering her on!)

(As always, if you just see blank white boxes with small "play" arrows under them where the videos should be, just click the arrow and the video will appear.  I'm not tech savvy enough to know why this happens or how to fix it.)

Ok, for real, the Amsterdam International stuff has been fun, but this has just been a crazy week for us.

We had a few appointments.  A few extra appointments basically wipe out all of our free time for the week.  We had 2-4 therapies each day this week . . . add in the appointments, travel time, 3 meals per day, 1 long nap, dog walks, and that's it.   I was basically a prisoner in my own home.

Luckily, Maya thinks therapies are more or less playdates, as evident by her so-happy-she's-nearly-falling-over (0:21) response when she hears that her 3rd therapist of the day is about to arrive:




Oh, and one of our appointments this week was for splint measurements!!!  Hooray!!!  (By the way, I got to pick out a pattern for the splints----rainbows?  Ladybugs?  Hearts?  Not for this girl . . . we went with red barns and farm animals---she's going to be psyched!)

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.

Packet is finished!

We have recommendation letters from her physical therapist, special instructor, and pediatrician.  I have mini-summaries of a bunch of articles from several different journals, highlighting the benefits of dogs working with special needs children.  A wrote up a mini-biography about Maya, and printed a list of therapeutic goals that dogs can help with.

Do you have a special needs child who would benefit from a dog?  Do you need to petition someone for permission?  Need help drafting reference letters?  Are you just someone we know who is nosy and wants to see our packet?  ;)

Email me and I'll be happy to send stuff along:  uncommonfeedback@gmail.com

The past two weeks have been really draining. We've been busy at home, Maya's been really cranky (teething? terrible twos arrive early?), I've been doing more remote work for KIPP, I have a million (ok, 4 or 5) doctor appointments that I need to schedule for Maya, and some friends/family have been having emotionally turbulent times, which tugs at me subconsciously. We also have a few larger projects looming, each requiring a lot of work. So, without further ado, here's one:

We've been working on kind of a big secret project over here, but I've been hesitant to blog about it because I wasn't sure where it was going to lead (although some family folks and one or two message boards have listened to me thinking through various parts of the process). But now I feel like we're up to our elbows in it, so it's time to put it out there.

We're trying to get Maya a dog.

(not this one)

A DOGGIE! Can you imagine her unbridled enthusiasm? (If you're having trouble visualizing, just click on the "dogs" tag to your right---->


The idea started because Maya's feeding/speech therapist has her dog (a very small, calm toy poodle/poodle mix) at her sessions. And when Maya gets cranky during therapy, I can point out the dog and she'll smile and sit up and refocus (ish). So Dave & I joked that we should get Maya a threapy dog. And then we thought about it more and more, and it seemed less like a joke and more like a potentially amazing idea.

Long story short---we applied to service dog organizations, and although we qualify, the wait is very long. Since the dog could actually help Maya to progress with her therapies we really don't want to wait a year (or longer) to get one. Our building is not typically dog friendly, but we are asking the board to waive the regulation for us, since the dog is recommended by her therapists and doctor . . . the board meeting is on Monday night and I've been busy amassing recommendation letters and working on a packet to give them. So, ideally, we could have "permission" to get a dog as early as Monday night. Then we would begin researching breeds, possibly trainers, etc. Very exciting :)

After I finish the package for the board I'll copy and paste some stuff up here so that you all can see the sort of stuff that we're hoping the dog will help with.

Oh, and that pregnant rat had 11 babies this morning.

Two days in pictures, with no transitions between stories, and the worst and longest title ever

So, folks asked about the flier that I mentioned hanging around the neighborhood. I'd love to share it because I got so many responses! The title was "Young neighborhood mom seeks companionship" and no sooner did I hang it up than the emails started pouring in.

:)

Ok, for real, here it is (at Starbucks):

("Attention Parents of Kids with special needs" is the title)

Speaking of Starbucks, you may have noticed that you can see a giant Starbucks cup in almost all of my stroller pictures. That's a reusable iced coffee cup, and we make the coffee at home. I'm not buying coffee (and disposing of plastic cups) everyday. Here's Maya, and my cup, at the dog run:

Playing with the new camera has taught me about angles. Here she looks like she's at a park in the middle of a big city:

While here she could be swinging in a much smaller town

But really, there's just one big skinny building, and the shots were a few seconds apart.

Around 7:25 every night, we say "Maya, do you want to watch "Baby Signing Time?" And she does this:

Everyday I wear 3 rings. Last night I made pizza, and before I started kneading the dough I threw the rings in an empty baby food container. This morning when I went to put them on, I found a fourth. One of these things is not like the other . . . (Dave made it pre-work)

Maya tried to feed it a veggie stick.

We're working on veggie sticks in feeding therapy. She wants to do it all by herself (which has varying degrees of success).

While I made her breakfast, she went to work unfolding the laundry:

And she subtly tells me to put the camera away.

(An aside: A few posts back, I mentioned my "throw yourself into the universe" theory (henceforth TYITU), but I haven't had time to extrapolate at all. Way back when I wrote about the not knowing, a few interesting things happened. 1. I was forwarded an article from the Wall Street Journal about a family dealing with a lack of diagnosis for their son, and it brought to light how many people in the country struggle in that limbo situation. 2. In line with TYITU, I emailed the author of the article 3. She responded and pointed me towards an actual organization solely for families of kids who don't have diagnoses (SWAN . . . "syndromes without a name"). That's what the "swan" tag on some of my posts stands for.)

We get by with a little help from our friends . . .*

That's nearly been the mantra this week. I wish I had pictures for each day, but . .. eh. Here was our social calendar this week:

-Wednesday (St. Patrick's Day) morning with Sarita & baby Olivia (complete with fresh baked Irish soda bread & coffee cake , c/o my best baking friend)
-Thursday morning: playground playdate & brunch with my folks (pics from Grandma)

-Thursday afternoon: playground playdate with Cathy, Fernanda & Wendy (see pic on my last post)
-Friday evening: steakhouse celebration with Dave's folks, and Uncle Alan, Aunt Lori, & cousins Brooke & Sammy
-Saturday: lunch & playground date with Aunt Lisa, Uncle Jason, Collin & Emerson
-Sunday: brunch with Whitney &  Craig (by the way guys, we got the camera!)

It might look busy, but it was fantastic. I'm operating under a throw-yourself-out-into-the-universe philosophy (yeah, yeah, insert eye roll here). But seriously . . . the weather is getting warm. We have a very heavy therapy schedule (getting busier as we add 2 weekly trips into the city this week for private feeding & speech therapy), and we (or I) need to socialize. And I feel little sparks of possibility as I push myself out of my comfort zone. So I've (literally) posted fliers in the neighborhood, thrown things up on message boards, and am reaching out to old friends for contact. Do you live nearby? We'd love to meet up. For real. Don't be shy :)

Also this week, Maya got a (home-made) license plate:

And learned that shadows are mysterious and elusive:

And she's a monkey at the playground, climbing climbing climbing. I'm trying to get a good video, stay tuned.

The not snowing

(The title is my clever way of breaking the tension after my heavy last post "The not knowing"---see, a play on words? And also it points out that today is a dreadfully miserable rainy--not snowy--day. Oh, and I'm putting up our snowstorm pictures, finally.)

(Don't be insulted that I had to explain my clever title---I'm not underestimating you, it's for my other blog readers. Really.)

Snowstorm pics--Dave & Maya got to play together in the snow for the first time this year (if you remember, the last snowstorm was filled with vomit and the worst waffle ever . . . this one was much better).

I was hopping up and down, whistling, making animals noises, and trying desperately to get a picture of both of them looking in the same frick-fracking direction and smiling:


Alright, off to a slow start. Dave, why don't you get in there with her?

Ok, cute snowman :) But how about we try to smile?


Dave-well done. Maya, step it up! Weee! Come on Maya! (slight hopping)

Maya, yes!!!! Argh, DAVE! HONESTLY?!

Sigh. Yes, Dave, that's much better. MAYAmayamayamaya . . .

Then I gave up and we took her sledding:

Or just plopped her on the hood of the car.

And we tried again for a pic:

So close!

FINALLY!!!!!!!!!!!!!!!!!!!!!!!!!!

The new walker: Our OT brought a walker for Maya this week, and I was excited to get her moving. She wasn't super into it on Monday night at home, and I thought that maybe we'd have more luck with it outside.

On Tuesday I was a total rookie---I honestly felt impressive loading up the walker to go to the park. Good for you! Be bold, take it out! Maybe she'll be more interested in trying it outside. The clunking and clanging as I tried to figure out how to move around with it was ridiculous. I giggled to myself for about a third of the walk to the park, shifting and reshifting until I came up with this:

On Weds I was a pro:

Dave & I looked at this picture and realized that if I painted eyeballs on the bottom of the tennis balls than I might scare the bejeezus out of people as we walk towards them.

And, anyway, the playground idea worked. She can't get far on her own yet, but if I push she'll toddle along to keep up just fine.

And now I'm tired of writing this, and I have no interesting way to tie it together, so we'll end with my favorite pic from this past month:

Perfection :)

Cruisin' for a bruisin' . . . wait, that's an innappropriate title

Maya is cruising! Notice our new lovely living room set-up. Maya crawls over to the table, stands up, throws everything that she can find on the table onto the floor, and then cruises along to the couch, as you see below:



Then she throws more stuff onto the floor, wiggles her tush for about 3 minutes, slides into a split and plops onto the ground. Progress :)


In case my earlier post made you woner what a rice bin is, here it is. It's a bin of rice (literally) with toys in it. Now that you know, we won't be using it anymore because today she picked up a handful of rice and shoved it into her mouth. Hysteria ensued (on my part) followed my sneaky giggling attemped repetitions (her part). And now that's done.


Mommy, this is not the time for pictures. Look at me. Honestly.

These are Maya's TheraTogs. She (usually) has them on under her clothes, so if you wonder why her belly looks smurfy the next time you see her, that's why.

Progress is what happens when you're busy not paying attention

The past week has been great. Maya's made all sorts of progress---suddenly, as these things tend to happen. What I mean by "suddenly" is that we plug away, doing things everyday that seem to make no difference (like standing her to play, or putting food on her tray even though she won't touch it) and then *suddenly, amazingly* one day she just does something new (like standing up on Friday).

In the past weekish, here is the progress she's made:
-(PT) She's pulling to stand, playing while standing up, and learning how to get back down again.
-(OT): She's gotten good at putting coins into her piggy bank toy, and today started to pick up food to feed herself:


-(Feeding): At each meal, she has some "real" food that I blend in the baby food processor in addition to the baby food (at least 1/3 of her meal). She also is eating Gerber puffs---they used to have to be broken into 6 pieces per puff, not we're down to only 3 pieces per puff.
-(Speech): She's babbling a lot more :)

And she has some things to say:

Oh, it's embarassing when they put me in shopping bags:

Walking at the mall:

Mommy, this is NOT the zoo! This is just a stupid pet store! Honestly . . .

Aunt Lisa, Uncle Jay, Collin & Emerson got Maya this little barn for Christmas . . . it's like crack to her. For whatever reason, she goes freaking crazy for it. Take today, for example:



Do NOT take my barn again. I'll be watching you.

We fought a brave battle against the acquisition of giant inflatable toys . . . but we've lost the war. Maya's OT (occupational therapist) brought over a big pool/bouncer thing, which I finished inflating this morning:

Hey, mom, I can stand in this!


It's dual purpose---we can put her in there with her rice bin, because she enjoys picking up and throwing the rice more than digging in it. Also, it can be filled with balls & beanbags so that she can "feel her body in space" (that's therapy talk for roll around in it). :)

And here are the furry, eyes-open, hopping-around, 9-pack of rat pups:

More updates hopefully to come soon. Here's a mini-update in the form of a giant run-on sentence. The content is what's been going on, and the writing style expresses my mental state :)

Maya learns more words everyday and is still trying to sign a lot but is tough to understand, starting to vocalize more which I'm trying to encourage, playing in a rice bin (boy that's messy) to desensitive her hands and feet, working on eating more textured foods (involves some crying and protesting), working on chewing solids, still doesn't like to stand up . . .I'm still working on painting #2, have made almost no headway in putting the 1300 pictures into albums, doing projects around the house (which has resulted in 2 weird photo galleries), also I'm the cat whisperer, and the rat babies have fur and are cute and their eyes should open any day now.

Oh, and Maya got a headband: