The days are slipping by. I keep meaning to post but by the time I get to even thinking about it, I’m too tired. This kid has been keeping me busy! Lily’s been enjoying summer school, summer camp (an after school program for kids who use communication devices), weekends in the country and outdoor dining. Here are some fun photos from the past few weeks.
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.
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!!
So… this whole kindergarten process is quite the ordeal. It’s like applying to university. I have to fill out 10+ page application forms and write essays, as do Lily’s teachers. This is what Lily’s teacher wrote when asked to use six adjectives to describe her:
- Dancing queen
- persistant (strong-willed)
That’s my kid! (And quite possibly it’s a good description of me too!)
Upon further reflection, I’m going to tell the PTs, OTs and the social worker at Lily’s preschool to stuff it.
My kid is NOT going to arrive at school every day (when she starts kindergarten next year) in her adaptive stroller. Don’t get me wrong, I’m not in denial that she should have one. But she does not need one for school.
#1 concern: They see her arrive in that and they’ll keep her in it. I’ve heard from numerous parents that this is a REAL issue. And even the Rett specialist agreed when I pressed her on the subject.
#2 concern: How will it make HER feel? I don’t want her to get used to being ushered around. I want her to feel as independent as possible. She’s a strong-willed kid. I want to continue fostering that.
So she might be slower than the average kid, and klutzier (which may or may not have to do with Rett Syndrome – if you know me, you know what a klutz I am), but she walks. And she walks well. And she will continue to do so.
Now I have to figure out how to get her to and from school every day. But I have a year to figure that out. Wish me luck.