IEP | blueberriesandgiggles

Hanging out at mom’s office in midtown Manhattan after a harrowing experience.

Lily’s fearlessness is something I always intuitively recognized, but it came to the forefront a few weeks back when I was packing up the taxi to take her to my office for the day. Her hand slipped from my grip for a split second and she darted out into the middle of Amsterdam Avenue as the stoplight was just about to turn green. I was able to grab her before anything bad happened but I was completely rattled. She, on the other hand, was not.

Maybe fearless isn’t the right term – it’s more of a lack of understanding of consequences when engaging in certain activities. Lily is learning to read and write and do math and all the other things that a typical 7-year old would be learning in school. She’s really smart. But there’s this missing filter that I find to be quite baffling.

When I’m baffled by something, I turn to research, which includes reaching out to other Rett parents to hear their experiences. Turns out that this missing fear filter is all too common for ambulatory Rett girls. I received over 40 comments on the Rett family support group from parents telling me stories of their ambulatory kiddos darting off in the middle of busy airports or fleeing playgrounds or even worse.

Fearlessness isn’t necessarily something that would spring to mind when thinking of a child with Rett Syndrome, is it? But from what I’ve experienced – and heard from other parents – this is a Rett symptom that is VERY REAL. I’ve not read about it in any literature or in any research papers. There are so many other crazy symptoms to keep an eye out for, this is one that’s just been overlooked.

So how am I managing this? Well, other than taking a healthy dose of Xanax to calm my nerves, I’ve spoken to school about my concerns and they are adding goals to her IEP about helping her better understand dangerous activities and why she should not be engaging in them.

Also, we’ve found an outlet for her fearlessness: rock climbing! For the past two weeks Lily’s dad has taken her to Brooklyn Boulders, an indoor rock climbing gym, where she scales the walls. Literally! Yesterday this kid rang the bell twice, which in rock-climbing lingo means she climbed to the tippy top of the wall.

On one hand, I’m eternally grateful that I have a child with Rett Syndrome who rock climbs fearlessly. I know too many Rett moms who would be overjoyed with seeing their sweetie take a few steps. So I don’t take my child’s abilities lightly. However, managing her lack of a fear filter – especially as she gets older – is something that her nannies, therapists, teachers, relatives, friends and parents will ALL have to stay on top of. So, I thank you all in advance for helping us navigate this dangerous and little known Rett symptom.

With love and gratitude,

C & L

Rock climbing with her dad in Brooklyn!

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.

Peppa pig in the doghouse.jpg