Water Lily

Posted on June 25, 2015 by mommabear0208

Lily and I just got back from Cape Cod with Grandma and Marina (my 10 year old niece). We were so lucky to have them! They flew up from Florida to be with us.

While there, L was in her element. Running along the shoreline, relaxing on the sand, navigating us through the busy high street in Provincetown and just enjoying time with her family.

But she misses Grandma and Marina terribly. On her Tobii – every night since they’ve left – Lily keeps saying that she wants to talk to her sister. (Sister is a picture of a girl so she means Marina). Those two are soul sisters for sure.

Lily and I had such an amazing trip with such amazing ladies!!! We made a lifetimes worth of memories and I took way too many photos, as usual.

Grandma and her girls

Book time/cuddle time

Showing Grandma how to use the Tobii

Pulling Marina through P-Town

Inchstones, not milestones

Posted on June 9, 2015 by mommabear0208

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

What a week!

Posted on June 5, 2015 by mommabear0208

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!

Teeth grinding, spitting and yelling oh my…

Posted on May 31, 2015 by mommabear0208

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.

When Plan B fails

Posted on May 28, 2015 by mommabear0208

Last week was one hell of a week. You know those times where everything happens at once? Like your kids stomach issues flare up to a point where you think you now have enough training to become a midwife. Or your kid isn’t sleeping through the night. And it’s the week that you’ve been invited to the board of directors dinner (a bit of an honor at work) and you’re doing your annual 7:30am presentation to them the following morning. It also happens to be the week that your ever reliable and flexible nanny is on vacation… And your nanny back-up plan fails miserably.

Maybe you haven’t had these exact experiences but possibly you’ve experienced something similar. You know, the stuff made for heart attacks.

Well, I thought I got through it all swimmingly well and that my presentation to the board was a success. According to every person in the room it went really well; except my boss didn’t think so. Whomp whomp.

Of course my boss, who knows me the best out of everyone who was there, saw that I wasn’t at 100%. And she asked me why.

I had a choice to make. I could either have brushed it off to just having the jitters or I could have told her about the hell I was dealing with regarding the previously reliable back-up care program that the Company provides. I chose to tell her the truth (or at least most of it; she didn’t need to hear the traumatizing details about my child’s constipation).

But it frustrates me that men rarely ever have to deal with the challenges that I – and other working mothers (single or not) – face in order to be able to show up to work each day. And I know that this is holding me back. And it makes me want to scream.

If you’re interested in knowing just how badly my plan B failed, read the letter I wrote below, at my boss’ recommendation, to the woman who manages the relationship with back-up care program at my office.

I realize now that I need a plan C, D and E. Any suggestions or advice would be most welcome.

Hi A,

I want to give you some recent feedback on the back-up care program.

When I used them last year, I had a fantastic experience. However this year proved to be a disaster.

Not only were they slow to respond to my initial request regarding finding an in-home caregiver for 4 days even though I gave them over a week’s notice, but they also made numerous other mistakes and mishaps:

* They did not cancel the caregiver they initially provided me with when I requested a cancellation. The woman showed up at my house! (I had cancelled this woman as she seemed dismissive of my daughter’s significant special needs and also because she came across as absentminded when I spoke to her on the phone the evening before she was scheduled to come). I then had to work from home on the first day I had requested a caregiver to work.
* When they did find a replacement for the three remaining days, I never received a call from the new caregiver. I called the back-up care service twice on the evening before the service was to commence (May 19th) and was assured that the caregiver would call me in the morning. When I didn’t get a call from the caregiver the following morning, I called them again. I was glad I was persistent because the agency who was placing the caregiver never got in touch with the caregiver to confirm the job. It was 1.30pm when I found all this out and my daughter was due home from school at 3pm. Note that it sometimes takes me an hour and a half to get home. Thankfully the caregiver was notified and arrived at my home in time to care for my child.
* This caregiver took care of my daughter the evening of the 20th and the morning of the 21st so that I could attend dinner with the Board of Directors and then present to the Board’s CR Committee the following morning.
* Today was going to be the last day in which I needed a caregiver (thankfully the nanny is coming back tomorrow) and I got a call from the back-up care program last night at 8.45pm notifying me that they had to change caregivers as the person who had initially taken the job (and had already cared for my daughter) couldn’t make it. So I cancelled it. I now need to leave the office early again today to meet my child at home. It is too traumatic on my child, and on me too, to have to train someone new and list out all of my daughter’s disabilities and needs.

I appreciate that there are sometimes hiccups in the system but this was one hiccup after the next.

Attached you will find the email I gave to the caregiver’s agency which I had already written out the previous evening when I didn’t get the required call from the caregiver. You will see why it is imperative to have one person, and not multiple (which the back-up care program didn’t comply with) care for my daughter.

I know you are not directly responsible for any of this but I did want you to be aware of this experience.

Please call or email if you’d like to discuss further.

Thanks,
C