Cookie decorating---fun for everyone, and you can sneak in some OT, too

I have some things to talk about--namely the plight of our assistive technology quest--but that will have to wait until after Christmas.  Right now we're all-holiday-fun-all-the-time, trying to fit in fun crafts or activities.  Here are some pictures from cookie decorating, done last weekend.


Cookie Decorating
I made sugar cookies and bought a big gingerbread man (at Trader Joe's for $2) for us to decorate.  Whipped up a simple buttercream frosting (3c powdered sugar, 2 sticks of butter, 1tbl vanilla, a few tbl of milk) and added some different food colorings for fun.  Maya had a great time playing with all of it, though the adults did a lot of the decorating.

Managing to sneak a little fine motor work into our decorating

Maya decides that she wants to use the blue icing.  About 10 seconds after this picture she came to the conclusion that the knife was too difficult to use, and dove in with her hand.

Grandma, there's icing on my hand!

And then she rolled the frosted hand in sprinkles.  It looks delicious.

A zoo trip, and self-directed OT

Miss Maya had the day off today, so we packed ourselves up and headed to the zoo.  While she's always loved the zoo, it's funny to think back on how her favorite animals have shifted.   She delights in holding her nose near the penguins and sea lions to tell me that they're "stinky" (really, they are---the fishy smell is overwhelming), she doesn't care much about looking at them.  The gorillas, who like to hang out right at the other side of the glass, have never held her interest for more than a second.  The current favorites:  alligators, tigers, and rhinocerous.  Why?  Who knows.  But she was in love. 

Fake rhinocerous, I love you almost as much as the real thing :)

Mommy, a tiger.  A real tiger!

The cover of the zoo map (which she clutches the entire time we're at the zoo) is a photo of the tiger.  She kept looking at it, then showing it to the tiger. 

Hey tiger, this is you!  Check it out!

This might be my favorite picture of the day:

Tiger: Wow---I can't believe what I'm seeing through these bushes.

Maya: Wow---I can't believe what I'm seeing through this window.

In other zoo news, she simultaneously desperately-wanted-to-ride and was-terrified-of the bug carousel.

She was exhausted when we got home.  She had a snack and then was having some sort of tantrum-y fit, whining and pointing and trying to throw herself out of the booster seat.  I took her out and carried her around the kitchen, muttering "what, what, what is it that you want?  I don't understand" and my mind wandered, again, to our quest for a communication solution.  As it turns out, she wanted the white board & dry erase marker (she lunged as we passed it on the counter).

She sat on the floor and drew (and I sat at the table and checked my email)  and suddenly I heard "Done!"

Done with what?

As it turned out, she was giving herself some fine motor practice with the marker cap.  I don't know if she's done this at school or what, but it was seriously cute to watch her practicing her to cap a marker, and triumphantly yelling "Done!" when she had it, well, done.


That's one focused girl  :)

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.”

The balance

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

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

And then I changed my mind.

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

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

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

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

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

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

I think you should do more.

(and then my stomach dropped)

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

I think you should do more.

Second, this is our life.  Life. 

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

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

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

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

I think you should do more.

I think we should do more, too.  

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

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

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

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

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

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

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

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

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

You live for the fight when that's all that you've got*

(sigh)

I'm feeling a little bit beaten down. 

Friday we had our preliminary IEP meeting.  For those of you lucky enough not to know what that means, here's a quick and dirty summary.  Maya is a special ed student----she will be entering preschool in Sept and needs and "individualized education plan".  When a 3 year old has an IEP, it mainly specifies what type of classroom she will be in (the ratio of kids to adults), what therapies she will get, and other special things she might need (like an aide).

Due to the dire state of Maya's evaluations, I allowed myself to think "This hopefully won't be too bad.  Obviously, she needs oodles of services.  Maybe there won't even be an argument."   I read the reports, highlighted things, had letters from our pediatrician and private feeding therapist, supporting the fact that we need a lot of stuff (just in case), and put together an awesome binder.   I was totally prepared.  I even blew out my hair, so as to look professional and put together.

Yikes.

My faux hawk mullety 'do

Ok, my hair wasn't helping.  But with really strong gel, I tamed it into submission.

I'm not going to give a blow-by-blow recap of the battle that was the preliminary meeting, because I  don't have the emotional stamina.  But here's the summary.

Pro's:  Maya will definitely have a seat in a center based pre-school (it's still up to me to find her a spot in a good school, but the city will approve that spot once I find it).  She will definitely have a one-on-one aide (paraprofessional).  She will definitely get the maximum number of therapy units that are provided by whichever school we go to (each school has their own maximum---for example, one school only provides a max of 2-30 minute PT sessions per week).

Con's:  In addition to the therapy in school, I want her to have therapy outside of school.  The guy in charge of our meeting says no.  He says it's his job to provide us with an appropriate school setting and nothing more.  I say that I want her current level of therapies to be maintained, and that since the school can only provide a certain number of sessions, I want the remainder done after school.  He acts like I'm asking for the moon, I say that this is neither an uncommon nor unprecedented request.  We stare at each other.

The bottom line:  I now have a lot of work to do before the next meeting in April (that's when we'll actually sign the IEP and agree on the preschool and the therapies):

-I'm touring another preschool this Thursday. 
-After that tour, I need to figure out which (of 2 schools) I like better, and schedule a playdate for Maya to go to that school and be screened.  Hopefully we get a school that says that she's a good fit and they will provide her with a spot.
-I need to gather prescriptions, letters from doctors (as many as possible), letters from all of our therapists, progress reports from all of the therapists, and whatever other evidence I can think of to argue for the inclusion of after school therapy in her IEP.
-I probably need to hire an advocate to attend the April IEP meeting with me. (Strength in numbers and all that jazz)

Also, I'm swinging into high gear with putting together our dreaded insurance appeal. 

It's very difficult to feel powerless. 

I know what I'm doing.  My binders are no joke.  The way that I am able to write rationales, organize paperwork, compile data . . . I'm pretty good at it, I think. 

It's rip-your-heart-out-painful and I'm-going-to-go-postal-on-your-azz-frustrating to put together work that's so good you think "How could any rational person argue with this?"  . . .  and just have it met by a pencil pusher who says "Um, no.  End of story.  But feel free to file an appeal if you disagree." (Smug smile and a shrug)

(PRIMAL SCREEEEEEEEEEEAAAAAAAAAAAAAAAMMMMMMMMMMMMMMMMMMM)

In a teary conversation with Dave last night I realized that I need to find a way to compartmentalize this stuff more---to not take it personally when the insurance people send me to another dead end, or this guy says "I'm not going to give you any of that, but we can talk about it again at the meeting in April if you want." 

I have to carve out some sort of zen, centered life, with satisfying and pleasant things, so that insurance appeals, IEP fights, etc (there may be a few other similar battles on the horizon) just become projects-I'm-working-on, and not things that keep me from getting a good night's sleep, and make me cry frustrated tears.

(sigh)

On a lighter note, our OT went to a taping workshop on Monday and now likes to tape Maya up.   Hee hee.

PS-Grab the "My plane landed at Amsterdam International" button if you have a blog or website.  Putting it up does three things: 1. It makes you my new bff, 2. It breaks the ice in sharing some of your experience with your friends/family 3. It helps spread the message to others who may be comforted by knowing their not alone :)

Our day in cell phone video clips

(As always, if you see blank areas with play arrows under them, just click the play arrow and the video will pop in.)

We're experiencing a little developmental boom over here.  I've seen it before---a bunch of new skills suddenly show up.  Sometimes they stick (like signing) and sometimes they disappear again only to come back later (remember when she first pulled to stand for a few days, and then quit and didn't do it again until like 4 months later?).   But I'm soaking it all up while it lasts. 

Besides the walking-with-the-stroller development (which is huge, huge, huge and appears to be sticking around for real), she's starting to chatter away a lot more.  She spend half the day babbling to me, Parker, her toys . . . I can hear her now talking to something in her crib (no joke).  Here we are, talking in the laundry room:


0:02-0:05 She signs "more"  (her version of it, anyway.  Kids who sign modify their signs, the same way a toddler might say "lello" instead of "yellow".  They get more refined over time).  Then she just is chatting away :)


She's a champion block stacker:



At 0:34 when I say "knock it over" I initially didn't know why she turned away from the table.  Watching it again, I just realized that she turned to knock on the wooden hutch.  If you rewatch it, you can see her starting at me, possibly thinking "Knock?  I thought we were doing blocks.  But, ok, I'll knock . . ."  
She's such a clever little thing, I worry that others won't be able to see the wheels turning in her brain.  Then she goes rogue and tries to hurl all of the blocks on the floor behind the table.

She might not know shapes or colors, but she knows the important things, like farm animals:


And she loves books.  And cows.  And books that have cows in them.  And she does a big celebration when she finds the cow page in a book. (This video has a surprise ending).



Also, if you don't "like" us (that sounds weird) on Facebook, you might not be aware that "Amsterdam International" has now been shared by 493 people (or organizations) on Facebook.  If you have a FB page and you haven't shared the link yet, feel free :)

Get out of my house! (Subtitle: Where I've been)

So I haven't had much time to chat and blog because I have been heavy into Project Clean-Out-My-House.  I feel the need to purge things . . . I feel like the household clutter around me is somehow turning into mental clutter that is fogging up my brain.  And I've realized that we do have a lot of hidden, under-utilized storage space (in cabinets, drawers, closets, etc.).  If only I could get rid of stuff we don't need & reorganize the stuff we need, we would have space to find permanent homes for the random things that are always floating around.

Today during naptime I tackled the toy area.

Before: (1: 30 pm)

(to be fair, I was already in the middle of spreading things out and cleaning them in this pic)

After: (3:30 pm)

The changes:  The toy bin rack moved into the guest room.  We really wanted to move to a more open-access type of play space, but the rack is too flimsy and Maya could pull it over if she tried to pull up on it.  So it went into the spare room and I'll have to teach her a sign for it, and then we can walk in and pull out a bin to play with.  The toys left in the living room are in containers that we already had :)

A SMART IDEA FOR KIDS WITH SPECIAL NEEDS (or any kids, really):  You might be able to see that next to the wicker basket with toys (and next to the pink tub) there is a clear, lidded tupperware container (like this sweater box from the Container Store).  Maya's teacher had a great suggestion:  Take a few highly motivating toys (that bin has a few books in it that Maya loves, and another bin across the room has her kitchen toys in it).  Keep them in containers with clear lids----either she will learn how to open them independently (which is good fine motor practice for kids with OT delays) or she will learn to ask for help, or bring them to me for help, etc (which is good for kids with speech delays--like Maya, or kids who need motivation to interact with others).

I've got about 35 projects going on at once :)