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.

Simple certainty & Kristi Yamaguchi. Wait, what? Kristi Yamaguchi?

In 1992 Kristi Yamaguchi won the gold medal for figure skating at the Olympics.  Weirdly, I clearly remember the bio piece that they played before she skated.  In it, they talked about how she was born with foot/leg problems and had to wear casts, braces, special shoes  (I just wikipedia'd to fortify my 12 yr old memory, and she was born with club feet.)  They talked about how her parents always knew she would walk and run, and that she started skating as a form of physical therapy.  I (along with most of the country, probably) thought "Wow!  Good for her!  And good for her parents, for always having hope and never giving up!" 

Kristi Yamaguchi with casted legs/feet.  I'm not BFFs with her or anything, I just found this on Google images.

I mean, I was 12.  I saw a picture of a little girl with casted legs and thought, how can any parent look at their casted up child and keep the faith that she will walk and run and jump?  I marveled at their hope and faith. 

But maybe they didn't have hope or faith. 

Maybe they just knew. 

I have a child with splints and a walker, who passed by her first and second birthdays without taking her first steps . . . but I can absolutely say that from the first times that I saw her stand and play, I've known Maya will walk. 

Without a doubt.   100%.  She would walk.  It might take a few months, or a few years.  She may need giant leg braces or walkers or crutches for a long while.  But she'll walk.  (And although we're not there yet, I also know that she'll run and she'll climb stairs.  It will come.) 

Not faith.  Not hope.  Not bravado.  Just simple certainty.

The same simple way that you know that spring follows winter, I knew that someday Maya would walk. 

Before we got to the walking, there was waiting, stretching, taping, splinting, laying on the mats and doing exercises.  Propping her to stand at the coffee table and play standing up, shuffling just out of reach and lifting her feet for her to feel a step.  Pulling to stand, then sitting.  Pulling to stand, then sitting.  Enticing her to cruise along the side of the couch by carrying my laptop to the end, then tricking her to go back and cruise the other way. 

There was work.  There was practice. 

There was the mental  marking of an infinite number of baby step celebrations (Her foot didn't turn like that yesterday!  She couldn't get up so quickly a week ago!)

But there was quiet, patient certainty.  I wasn't hoping she would walk, I wasn't kidding myself or keeping my chin up,  I just knew she would.  Clear, simple knowledge. 

How did I know?  I could see it.  I'm with her all the time.  I can see tiny shifts in her abilities that many, many people would miss.  While strangers might see that she falls over 7 times at the playground, I see that she caught herself with her hands 7 times (!), and she's not tipping over backwards as often. 

They see the things that she has trouble doing, and I see how far she's come.

They see the things that she can't do yet, and I see that this month she can do things that were inconceivable 2 months back.

They see a girl held back by splints and a walker, and I see a girl who is zooming (sometimes too quickly for her own good) around a mall.

They see disabilities, and I see new abilities. 

And I'm not judging them for it . . . really, how could an outsider see it any other way?  They see her walker and her, um,  interesting new way of taking steps (she looks like she's rock climbing as she walks---hands and arms in the air as she overcompensates for her weak core by using her arms to help her go) and it really jumps out that she's working harder than the average toddler to get around.  It's easy to see her challenges, but it's impossible to see how far she's come.

Hands up, like she's climbing rocks, to help her move and balance

But I see it all the time.  And luckily, it doesn't matter much to me what other people think she'll be able to do (well, except for Dave.  But that's for another post,  maybe a "part 2"). 

I would bet that there are a lot of other moms out there who feel the same way.  Although I had the idea for this post a while ago, I waited until she was actually walking to speak my mind, just in case there were any sweetly sympathetic readers out there who might respond with the cheery "Oh, Dana, of course she'll walk!  Keep the faith!  Fight the fight!  Keep smiling!"  I love the positivity, but it kind of misses the point for this.

What's the point again?

I guess the point is that parents are often gathering massive amounts of qualitative data on their kids (oh, my science nerdiness is showing, isn't it?).  We remember the past, and we're proud of where we are today.  (If you see a toddler with a walker at the playground, don't feel bad for that kid---she's happy to be moving independently.  And don't feel bad for the mom, as she's likely excited that the walker is working, and wondering how she can help her kid get up the stairs to follow the other kids.) 

Also, we can see the future.  Kind of.  Sometimes it's just easy to see the road our kids are walking on, and we can be totally certain of something that you may think we're wishing and praying for.  Sometimes, for us, it's easy to see.

(And lest anyone roll their eyes and think "This must be easy to write, now that Maya is taking her first steps and all", I'll throw another one out there.  Maya will talk some day.  I'm completely sure.  Maybe not until she's 5 or 6-or later- but she wants to, and she tries.  Someday her muscles will catch up, and words will come.  I don't say it boldly, or as a dare, it's just a simple truth . . . after summer comes fall, and someday Maya will talk.  Simple.)

I can stand up by myself

Those of you who aren't Facebook fans (you've got nothing to lose, may as well go ahead and "like" us) might not have seen this yet . . .

This morning Maya stood up---not pulled up, stood up without touching anything---for the first time ever! Once she had done it twice I grabbed my cell phone and got it on tape (turn down your volume, I'm screechy):



(If you just see a blank area with a play button, click play and the video will appear)

Why can't we just pick some apples like normal people?

Seriously.  We are not fruit hoarders . . . how did we end up with this many apples?

I'm going to plead ignorance.  I had no idea how many apples would fit into a bag.  Plus, last year we went to a different orchard---where you paid for a (much smaller) bag, and then got to fill it.  This place (Bishop's Orchards, which was great) weighed the bags, but we still overfilled them.  This is slightly over 2 bags of apples.  Very poor planning.   I'm hoping that applesauce freezes well, because Maya likes it.  Any other apple ideas?  Feel free to add them as a comment!

Anyway, we met my mom, sister, brother-in-law, nephew & niece at the orchard and had such a fun day!  Here are a few pictures:

                                          Emmie: Maya, I will set you free.

                                         Maya: You know how to work the straps?  I've been trying to figure it out
                                                    for months!

Cousin love (and tickles)

Complete pictures from the day are up on the blog's Facebook page (where photo memory is unlimited!).  Remember, you don't need to be a Facebook user to see our fanpage, it's public---just click on the picture at the top of this page, or google " 'Uncommon Sense Blog' Facebook".

Sudden Progress!

Right before we left my sister's house, Maya did 2 amazing things!  First, she signed "milk"---she's never done it before, and it's always amazing to see her sign something new.  I've been signing milk daily for months and months, and never even seen any indication that she cares when I sign it---then suddenly, boom!  She does it!

Annnddddd, then we decided to hand her her bottle (she gets one before naptime and one at bedtime) in the car to see if she could try to drink it on her own---and she did!  She needed a little help as the milk level dropped (we may need to switch back to smaller bottles that would be easier to tilt up), but she was able to hold her own bottle in the car.  I was a little bit giddy :)

Very slow progress:

On the opposite end of the progress spectrum, physical therapy type progress is slow going.  The great news is that Maya stands a lot more---she pulls up quickly and cruises well.  You guys get to see a lot of pictures where she looks like a stable, standing rockstar.  Like this:

However, in reality, she often looks like this:

(I like to think of this move as the "teapot" from the line "tip me over and pour me out" in the teapot song)

That's Miss Maya mid-fall, while cousin Collin thinks "What happened?  You were just standing so normally!".  She stands (and moves) with her knees locked---so the smallest wobble can send her tumbling.  She also tends to fall over when she gets excited (which is pretty darn cute, actually).  She'll be sitting on the floor and I'll say "Do you want to watch Signing Times?"---and she'll get all excited, start to laugh and wave her arms around, and topple right over :)     We're working on it.