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.