Tellin’ time

orange watchA few weeks ago, Lily lost a tooth and got $5 from the tooth fairy.  She told me and Elaine (her speech therapist) exactly what she wanted to do with this money: buy an orange watch!  You see, she’s learning to tell time, something that she told us that she wanted to do, of her own volition.  A watch is the perfect accompaniment to this activity, no?  She’s so proud of this orange watch.

Earlier today, I got this text from Elaine and it made my heart burst with pride:

It was the most amazing thing watching [Lily] yesterday try and figure out on her own what the clock said… she kept looking at the analogue clock I brought, checking a cheat sheet I made for her and then making selections on the Tobii…  it was so exciting to see!

We are so lucky to have not only the Tobii, but also Elaine – the SLP/AT extraordinaire – to help us communicate with, and challenge this kiddo!

 

The to-do lists are endless

My soul is hurting this week. 

I’m still fighting for basic Medicaid services (like diapers, overnight respite, daytime respite) while trying to prepare (and not completely flip out) for Lily starting kindergarten next month. 

I’ve had to postpone our move to the Upper West Side which means she will be in for quite a bus ride to and from school. So I need to make sure it’s as comfortable, and as safe, as possible. I’ve already gotten a doctors note requesting what must happen but trying to find the right person within the DOE to make this a reality is proving impossible.

Good news is that I’ve averted the ‘adaptive stroller’ issue for the bus but that was a research project and fight in its own right. And the fight is only half over. 

There’s always so much to do. The lists I have written down, and in my head, are endless.  So the idea of moving while all this is going on (and I’m not even adding the to-do’s from my job) makes my head reel. 

At the top of these lists (other than bussing and Medicaid) is to get her new school up to speed with her abilities, and needs (they’ve never had a Rett sweetie nor do they have experience with the Tobii), get Lily acclimated to a new school with new kids and new teachers, find a few new home-based therapists to replace those that fall off after pre-k (hint: this is not easy), and remind myself that it is all going to work out. Deep breaths. 

I wish I could say that Lily’s sleep has stabilized but that would be a lie. And the panic attacks, though less frequent for now, are still happening. 

The upside? Lily is keeping me laughing with her silly antics. Yesterday she kept pulling down her Peppa Pig artwork from the wall. Shamekia the nanny initially thought it was an accident so kept pinning it back up. But after the third time she found it on the floor, she asked Lily ‘you don’t like Peppa Pig today?’ And Lily scrunched up her face in a recognizable look of disgust, which means ‘no.’  And then she giggled about it.

Why my child doesn’t like Peppa Pig all of a sudden is still unknown to us. But I love that she is always finding new ways to let us know what she likes, and doesn’t like. 

If we (meaning me, Shamekia and/or her therapists) figure out why Peppa has turned into persona non grata, I will let you know. But for now, I will leave you with a visual of my kid admiring her art wall sans Peppa from earlier today. 

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A visit to the library, with Teetee!

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I didn’t mean to keep you all hanging from my last entry. I did take Lily to the library as she requested. But we had an extra special guest with us – Teetee Angela from Florida!!!

Initially Lily was enthralled with the library. We read a few books, tried to find a few new ones (Teetee and I thought the book Chicken Cheeks was hilarious; Lily was ambivalent) and flirted with the idea of taking her to the ‘get ready for kindergarten’ program that was serendipitously starting while we were there. However, at that point she had enough and we left.

We had such a great weekend with Teetee.  Not only did we go to the library, but we went to Brooklyn Crab for lunch and went swimming at a friend’s pool where Lily had the time of her life.  We were so sad when it came time for Teets to head back to Florida.  Good thing we get to see her again in a few weeks!!

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Don’t go Teetee Angela!

 

 

 

 

Graduation!

I’m such a sucker.  Of course I had to buy the ridiculous preschool graduation photo.  I mean, it’s the cutest thing in the world.  Second to her class photo, which was taken only a few months befimageore.

It’s been a quick two years for us.  Lily has grown so much, both physically (at least 5 or 6 inches) and intellectually (see next blog post).  We’re going to miss that little cocoon of a preschool.  The teachers, the para, the therapists, even the administrators, are all amazing there.

And I was so touched when the principal asked me to give the preschool commencement address.  I wasn’t quite sure what I was going to talk about but I knew it had something to do with all of the wonderful people I have met, because of Lily.  Thankfully my little speech went off without a hitch.

However, the run-up to the graduation was touch and go.  I wasn’t even sure Lily was going to be well enough to attend.   A week or so prior, her appetite went.  Her sleep meds stopped working (again).  She started having severe panic attacks.  And she was getting clumsier and weaker.  It was a scary period.  The morning of graduation, I wasn’t sure whether to take her to the ER or to school.

Thankfully she woke up that morning feeling much better.  She even managed to have a little bit of her smoothie.  Shamekia (her beloved nanny) met us at our home that morning and helped us get to school.  Lily did not want to miss graduation.  She had practiced so much.  And you should have seen her up on that stage, dancing and laughing and feeling like a star.  It was a beautiful sight.

I’m so glad she went because she had such a fun morning.  She was surrounded by all the people that she loves – her mommy, her nanny (mommy #2 – in the yellow dress), her para Urzsula (mommy #3 – in the striped shirt), her daddy, teachers and therapists, past and present and all of her school friends.  She had a blast.  And thankfully she started eating and drinking again that day.  And from that day forward, she’s been getting stronger and stronger.

We’re still struggling with sleep.  And the panic attacks come and go.  But damned if we’re not going to have the best summer ever.

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A different kind of learning

Lily continues to impress both her home-based and school-based teachers and therapists (all 15 of them). This kid is super smart and silly, and most days she’s doing amazing things with communicating on the Tobii. Just the other day she had a conversation with her home teacher Denise to tell her that she was ‘angry’ and ‘greedy’ at school because she couldn’t play with the computer when she wanted to. And Denise explained that Lily can’t always get what she wants when she wants.

Oh, the perils of being an only child, raised in a single-parent home and having special needs on top of it. Creating boundaries and holding to them, reminding her that yelling is not nice, that sharing is important; I’m doing the best I can. But sometimes I’m not sure it’s enough.

She continues to be (mostly) sweet and loving and loud. I’m pretty sure that most parents of 5 year olds question their parenting skills and are driven mad by the noise and the insubordination. This brings me a strange sort of comfort. Makes me feel almost ‘normal’.

But I digress. Learning. It’s different for girls with Rett Syndrome. Some days this kid is on fire – engaged, communicative and creative. But there are those other days, the days when she didn’t get enough sleep or something else Rett related is going on, that she really struggles. I’m grateful that she, and I, have such a great support system who understands her ups and downs and are so creative in their approach.

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Admiring her artwork – and her favorite ‘literary’ characters

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Snapshot of her play/therapy room (PS someone got her first big-girl tooth!)

These photos make me so happy

 

I love that Lily’s classmates want to help her, play with her, work with her.  I said in my previous post that she causes a bit of a stir everywhere she goes, and school is no exception.

Walking down the halls, kids stop by to say hi to her. The teachers, therapists and aides all look forward to seeing this kids smile.  She is such a ray of sunshine to all she meets.

 

 

Food

Here’s a note I received from L’s school speech therapist earlier today:

I just wanted to reach out to you and let you know that I offered to Lily some of my own gluten free vegan dark chocolate birthday cake here at school. I know she doesn’t eat gluten or dairy so I figured it would be a nice treat. She absolutely loved it and couldn’t stop giggling and reached out for more. The amount would be equivalent to 3 adult spoonful sizes. She very appropriately used her tobii during the activity. She let me know she was happy multiple times and said something new several times on her tobii to let me know it was different.

She had such a good time.

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This kid has ALWAYS loved her food!