Friday, August 31, 2012

Caroline's official start in special ed.

This week was bittersweet. We said goodbye to Caroline's therapists, daytime nurse, classmates, and teachers. I am deeply thankful for all they have done for Caroline. They always treated her with such respect and affection. They saw the person, not the disability. I think these goodbyes were difficult all around. 

Yesterday, Caroline and I attended the open house at her new preschool. As soon as I walked in her classroom, I felt the warmth and commitment of her new teacher, therapists, and staff. Any anxiety I felt as result of these transitions quickly melted away. My heart smiled when her school therapist showed me how her adaptive equipment was already set up in her class. She seems to be the only student with a special adaptive chair/desk, but it will be placed in a way that enables her to always work side-by-side with her class friends (at their table). 

I can't help but feel like I hit the lottery with her new teachers! She's in wonderful hands. I have a feeling she is going to love her new school. 

Class starts next week! 

Caroline at her new school
Caroline's school supplies (except for my label maker!)
Here's Caroline modeling her empty backpack (her school requires a full-size). 
We're going to hook it up to her wheelchair. 

Tuesday, August 21, 2012

A month of transitions

Caroline is in the process of transitioning from both Early Intervention Services and private daycare to a special needs preschool program. In September, Caroline's school, classmates, childcare, therapists, teachers, and daily schedule will be different. (please click here for a previous blog post on the enrollment process)

Mike and I will always be grateful for Caroline's "first" school experience at her current preschool. Caroline thrives in a class-based setting. She is so happy around her school friends. We are certain that these last two years have played a major role in her cognitive and social-emotional development. I am especially thankful for Caroline's first life lessons on compassion, inclusion, and friendship.

We are also going to miss her awesome and dedicated therapists. For the last year and a half, Caroline has received various therapies through Early Intervention services. She is currently wrapping up her last sessions before officially "graduating" from the program at the end of August. The therapists and service coordinator have equipped us with information and skills that will benefit Caroline for the rest of her life.

Transitions are bittersweet. I recognize for that these changes are for the best, but I am somewhat anxious about the adjustment period ahead. Caroline LOVES going to school and my hope is that she will quickly adapt to her new environment next month.

My happy Caroline enjoying music (during her first metro ride) 

Tuesday, August 14, 2012

Using the toilet

One of the first things I learned about Rett Syndrome was how Caroline would need assistance with every aspect of her daily life, including toileting. I remember thinking "ok, so we'll have to feed her, bathe her, dress her, and change her for the rest of her life. No problem." As a mom, it's easy to be unfazed by these needs. In fact, I was almost too quick to accept that we would always need to change her diapers. I didn't consider that maybe Caroline would eventually prefer to use the toilet.

About a month ago, one of my Rett mom friends asked me if I had started "potty training" Caroline. I didn't realize that potty training was a possibility at this point...or at any point in the future. My friend told me that a lot of Rett girls use the toilet for their bowel movements. I was surprised. When Caroline turned two in January, we had (inconsistently) tried using a potty training chair. The chair offered little support and Caroline struggled to hold her balance. We quickly gave up using it.

We started following my friend's advice that very same day. We got some neat toilet seat covers (pictured below) and got rid of the potty training chair. We put Caroline on the toilet after every snack and every meal. To our amazement, Caroline "got it" on the first try. She knew exactly what she needed to do. Her nurse at school started following the same routine with great results as well.

At this point, Caroline has about a 90% success rate.  I never imagined that despite Rett Syndrome, Caroline would learn to use the toilet so quickly.

On a cute and funny note, Caroline rubs her nose right before she "needs to go" which gives us enough warning!


Thursday, August 2, 2012

Legs in the air!

Rett syndrome boggles my mind. Caroline is unable to initiate a single step on her own, but she can kick her legs up in the air like nobody else! 

Caroline can also sit unsupported for a long time. She will, however, take any opportunity to lean back (to avoid working any harder than she needs to!).