Writing letters

My heart is bursting with pride. Sharing a note Lily’s teacher wrote today along with some pictures…

This kiddo had an amazing day! She’s been very interested in notes and letters (wanting to keep re-reading the notes you send in her lunchbox, very proud of the card she wrote for Christine’s birthday, etc). So yesterday and today we started talking more about letters. We talked about parts of a letter (greeting, body, closing) and Lily helped me sequence a letter that I wrote to Ms. Ariel. She was very into the activity (wanted it to be a secret and a surprise, and asked for “more” when the activity was complete). Then, she worked on her own letter. Christine, we sent it home in her backpack. We were blown away… she wrote it almost completely by herself, with nothing but some verbal prompts (e.g. “don’t forget, a greeting is like a hello…”).  She chose who the letter was for, what she wanted to say, and how she wanted to close out the letter. It was really great practice (writing work and using the Tobii), so I’m sure you’ll be seeing more letters in the upcoming weeks.

Today we also read a few more chapters of Junie B Jones and she was laughing hysterically at the silly parts. In one of the chapters, Junie is sharpening pencils (and attempts to sharpen a crayon in a pencil sharpener, which doesn’t go so well). Lily requested, “my turn,” so I took her to the office to sharpen a pencil. She seemed to think it was great fun! She once again did a fabulous job asking comprehension questions during the read aloud, and seemed very engaged. Once again, she was a total cuddle bunny today. At the end of the day, she kept going back and forth between me and Ariel, squealing, and leaning in for hugs. She also put her arm around each of us at least once, which was so exciting! She was very, very happy this afternoon.

See you soon,

Ellie

P.S. Lily and I had matching shirts on today, which she seemed to think was pretty funny!

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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. 

Peppa pig in the doghouse.jpg

The importance of genetic testing and Rett Syndrome…

I’ve recently been approached by two families who have concerns about their daughter’s development.  And both have asked me to share our journey to an accurate diagnosis.  If you remember, Lily was given two mis-diagnoses along this journey.  So I’ve decided to dedicate a post for families who are on a similar journey.  if you’re new to this site (you found me through middle of the night googling), please feel free to leave a message below and I’ll get back to you if you have any follow up questions.

Q: I am wondering if you could share with me a little more about your journey to an accurate diagnosis, as well as any providers or evaluations that you felt were significantly helpful?

To me, what was the MOST definite and defining moment for Lily was getting the genetic test results with the Rett diagnosis.  Here are the ‘steps’ it took to get there:

Autism diagnosis August 2012

Lily was talking and social and hitting all her milestones and then BAM.  At around 15-16 months, there was a major regression. The language went away, she became super aloof and disinterested and physically started demonstrating some delays as well.  She was initially diagnosed with autism at 18 months (both through Early Intervention and a private developmental pediatrician).

ESES Diagnosis November 2013

Once we started EI services (she was getting 20 hours of ABA, plus Speech, OT and PT), it became apparent that the autism label didn’t fit.  The words started to come back (and then go away – which is still happening).   She came out of her shell and was social and interested in the world around her again.  We then had a bunch of EEG’s done to try and figure out the underlying cause of her regressions and found out she had a rare form of epilepsy called ESES.  And we thought ‘aha! this is what is causing her regressions’.

Rett Syndrome Diagnosis January 2014

But while she was being treated for the ESES (using high doses of steroids that I had to inject into her leg every day which totally sucked for us both), we got the genetic results back (which we did to see if there was an underlying reason for the ESES).  Rett Syndrome was confirmed.  All her doctors (and she has many) were surprised with the results as she didn’t fit the ‘Rett girl’ profile.  She walked, she had some hand function and she wasn’t having seizures (though she does technically have epilepsy and has epileptic episodes which I’ve been told are NOT seizures).

Q: Who did you work with to get the Rett diagnosis?

The geneticist we worked with was Dr. Marion at Montefiore in the Bronx.  And what was especially great about being at Montefiore was that there is a Rett Clinic there (the only one in the tri-state area, led by Dr. Sasha Djukic) so we were already in the Montefiore system.  It also helped in terms of scheduling doctors appointments as the Rett clinic is open on Fridays and we now just go there once a year and see anywhere from 2 to 5 specialists in a day instead of going back and forth to the hospital to see all the different doctors.
Q: Where are you today?
A Rett diagnosis sucks.  But you learn to live with it.  And knowledge is most definitely power.  I know what I’m dealing with and I can better prepare myself and my child for the road ahead.  And by the way, it’s mostly a happy road we walk.
Q: Is she on a special diet?
Lily has been following the GAPS diet for the past two+ years (though she has pizza on Fridays at school) and is on the growth charts which I believe is because of the healthy foods and supplements she takes (many girls with Rett start to fall off the growth charts by the age of two).  She sees a nutritionist regularly.
Q: What types of therapies does she receive?
She goes to a private special needs preschool where she receives numerous therapies, and has an augmentive communication/speech generating device that she navigates with her eyes (think Stephen Hawkins).  It is called a Tobii.  Actually she has two Tobii’s – one at home (which we own and were able to procure through the EI program) and one at school (which took a year of advocating through the DOE CPSE program).
Here are the services she receives through the DOE, on a weekly basis:
At school:
  • 1:1 para professional for health and safety reasons (this is imperative: our girls cannot self defend)
  • 5×30 Speech Therapy
  • 4×30 Occupational Therapy
  • 4×30 Physical Therapy
At home (she has a ‘dual recommendation’, sometimes called an RSA, and is supposedly impossible to get through the DOE):
  • 6×60 SEIT (Special Education Itinerant Teacher)
  • 3×45 Speech
  • 3×45 OT
  • 1×45 PT
  • 4×60 Assistive technology services (so that the home speech therapist can program both Tobii’s and upload course curriculum to them so Lily can follow along in class and participate).
On the weekends she goes horseback riding through the GallopNYC program and is loving it.
Yes.  It is a lot of therapies.  And yes.  It was not an easy decision to put her in to all of these therapies.  But the proof is in the pudding:  My kid is thriving.
We live a mostly happy, and always busy life.  Yes.  It is possible.
Happy Girls, Halloween 2015

Happy Girls, Halloween 2015

Screw that

 

Running

Running to the Farmers Market with Mommy

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.

Guess who chose these beauties out at the farmers market?

Guess who picked these beauties out at the farmers market?