Lily’s end of year progress reports have come in – from all of her teachers and therapists at school, and then also from the after-school therapists.  I’m drowning in paperwork!  But I’m also glowing with pride.

I’m not naive to the fact that my child is still very far behind in many things, but her delays have more to do with her motor-planning and communication struggles than her cognition.

Every single teacher said that Lily is smart, motivated, determined and funny.  I couldn’t agree more!

Her home-based teachers say she has made progress in:

• Developing her language and operational skills with the low (print) and high tech (Tobii) versions of the PODD-12 communication system (she is walking over to the Tobii independently and is using it to communicate needs and desires – everyone now knows that she loves blue flowers and so not only do I have them planted in our garden, but she is now making pictures of blue flowers at school and we are communicating about them all the time.  This morning we were watering the flowers and I talked to her about how when she asked for something, she got it!  This is HUGELY motivating!)
• Regulating her mood and behavior during therapy sessions and has become more flexible and tolerant of new things (I’m hoping this translates to wanting to watch more than just two movies!!!)
• Demonstrating more reciprocity in interactions, and increasingly opts into activities, either on her own or by verbal request
• Physically, Lily is maintaining an ability to walk independently on level surfaces
• Also – Lily has used her voice meaningfully, on occasion, to communicate.

Take THAT Rett Syndrome!

Watering her blue flowers with Mommy earlier today

Here are a few low/highlights:

• Part of the ceiling collapsed in my living room
• Lily’s bus ride home on Tuesday was 2.5 hours long (this is not the first time this has happened)
• The guy from the Office of Public Transportation is verbally harassing me (in a flirty, filthy, patriarchal way) as I try to get to the bottom of the bus delays
• My car was towed this morning 😦

BUT…

• Lily had an awesome week and continues to amaze me and her therapists with her abilities
• She is loving her blue flowers
• And the biggest highlight of all was that we got a visit from Taffy! (Psst: I may be getting a therapy dog for L and wanted to see how she would do in the presence of one…. The results speak for themselves!)

Enjoying the blue flowers on our patio

Playing with Taffy!

I did not want to be a mommy today.  Today I wanted to sleep in, sip my coffee while reading a book and maybe go for a run in Prospect Park.  But that’s not how life works, is it?

Instead, my alarm clock (i.e., Lily) woke me up at 5.45am, on a Saturday.  I shuffled into her room half asleep and put the computer on her bed for her to watch a movie so I could shuffle back into my bedroom to snooze a bit more.  Don’t judge.  And if you are judging, don’t worry.  It didn’t work.  Lily watched her movie for about 15 minutes and then scooted out of her bed and came looking for me.  Of course I obliged.

She then yelled at me for a good 5 minutes while I was i the kitchen preparing her morning smoothie.  I wasn’t going fast enough for her (as usual)…

Finally after two large bottles full of smoothie, she cracked a bit of a smile.  She’s a temperamental one in the mornings…

Anyway, we had a LOT of time on our hands and so I decided to do a Home Depot run.  I figured it would be relatively empty given that it was 7.30 on a Saturday morning.  I was mistaken.  But thankfully she was a trooper and we found blue flowers!!! to plant in our container garden and a few other things.

When we got home, I unpacked the car.  Living on the second floor of a walk-up has its downside; hauling bags of soil, dozens of flowers, a ginormous package of paper towels and a 33 lb kid up that flight of steps was exhausting.

Once we got settled in, we went out to the patio and she helped me pick rosemary so I could start preparing her lunch: rosemary chicken with fingerling potatoes and rainbow chard.

Around 10am, Lily looked sleepy so I put her down for a nap.  I should have put myself down too but instead I did some major gardening.  I was inspired by my child, who last week told two different people (via the Tobii) that she wants to plant blue flowers on the patio!!!!  Dammit there were going to be blue flowers!

Just as I was about to take a break from gardening to nap, Lily woke up.  It was getting close to lunch time anyway.  And her occupational therapist Katherine was going to be there soon (she was doing a make-up session).

While Katherine worked with Lily, I did more gardening.  I was on a mission.  And once Katherine left, I had Lily help me plant the last of the blue flowers.

I failed to mention that all day long Lily was spitting, teeth grinding and yelling.  I’m getting used to the teeth grinding and the yelling but this spitting thing is new.  And it’s messy. I guess it’s a good thing I got that 10-pack of Bounty.

Anyway – all of this to say: it was a long and tiring day (a lot of it was self-inflicted I realize) and regardless of the exhaustion and not wanting to be a mommy, I still managed to have a fun time with my kid.  She’s just so cool.

”Play it again please!”

She said this to me. While we were getting ready for school, and work this morning. It sounded jarbled like when you hear someone trying to speak to you under water. But the intonation was perfect as well as the pitch. And the timing of her request was appropriate (the song was about to end).

The song? “Let it go!” Of course we listened to it nonstop all morning!