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.

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)

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.