Musings On the Less Visible "Special Need" and some Reasons to Celebrate

I find that I use this blog most often when updating family and friends on things revolving around Lilly's medical care, surgeries, recovery, etc.  As I think about the variety of needs that comprise our family, however, it dawns on me that, while Lilly's medical needs are indeed significant and each surgery can really consume us, her medical needs do not impact our family functioning on a daily basis in any significant way.  When I think about Bella's less visible special needs, however--developmental delays, emotional delays/dysregulation stemming from early childhood trauma, and learning issues--these are the "special needs" that permeate our home nearly every moment.  These needs are harder to articulate and blog about, and addressing them is less straightforward than twice yearly surgeries and hospitalizations.

I wanted to take a few minutes tonight to share some areas of celebration in Bella's life and share the hard work that has gone into them.

First, Bella has been working super hard on reading.  She is a 6th grader this year, but at the end of 5th grade, she was still reading on basically a 1st or 2nd grade level.   Reading, of course, impacts her ability to learn in EVERY subject area of school, since at this level so much of the learning they do in school is dependent on being able to read independently.  So, over the summer, we began daily Facetime sessions with Aunt Judi--Tom's sister in NJ who is a special ed teacher in the public school--to work through a great reading curriculum, entailing daily homework and reading with me in addition to her Facetime sessions with Aunt Judi.

This picture is love--all the time and energy that Aunt Judi has poured into Bella nearly daily since June--and this picture is perseverance--all the effort Bella has put in each day, sometimes eagerly, sometimes with tears and frustration.

When Bella got back to school this fall, she had a new special ed teacher, and, when her sweet teacher was trying to administer beginning of the year assessments to test Bella's level, she was surprised when she had to give her harder and harder material to find the appropriate level for her!  Success!  We continue to work every day on "Aunt Judi's reading work," in addition to her school homework, and Facetime once or twice a week to keep up her great progress.  I am so proud of her hard work and progress. And I am SO thankful for a sister-in-law with the expertise, willingness, and patience to pour into Bella in this way.

Second, Bella is finally beginning to enjoy riding her bike "independently." I tried to upload a video taken tonight, but blogger is being uncooperative. Maybe I'll get it up on Facebook. Here's the backstory: Riding a bike is another area where Bella's delays and relative weakness--balance, motor planning, coordination--are really evident.  From the time she first joined us from China at the age of  nearly 6, it took her many many months simply to learn to pedal "over the top" rather than backwards, even with training wheels on.  When she mastered that, it took literally years to try to begin to lose the training wheels, and, even after attending a week-long bike riding camp a few years ago, geared at kids with intellectual or other disabilities that impact bike riding, she still hadn't quite mastered riding on two wheels.  We had ditched the training wheels in favor of an awesome handle on the back that allowed me to run alongside her and steady her when needed, and she had been doing GREAT, nearly mastering the balancing and ready to focus on steering, braking, starting and stopping.  However,  a huge growth spurt rendered that bike too small, and the beautiful bigger bike she got for Christmas last year proved to be more difficult to balance again.  It also proved to be more challenging for me to run fast enough to keep up with the bigger bike and harder to steady her due to her increasing size and weight.  My hope was that last spring and summer she and I could get out regularly to practice because--with Bella--so much repetition is required for things to "stick."  All it took, however, was one big fall and some pretty nasty road rash that literally took all summer to heal, for Bella (and me, honestly) to decide that "enough is enough." She was now pretty traumatized and was no longer willing to get out and practice.   

Before I continue this saga, let me just say that I find parenting Bella to be such a fine balance of cheerleader, comforter, coach, encourager, teacher, advocate, affirmer.  Striking the right balance at the right time with her is a huge challenge; sensing what she needs from me at any given time is not easy, and when she is fearful--either for her physical safety or fearful that she may be letting someone else down--she is prone to emotional "shut down" or dysregulation. 

As a parent, I want to be the one that says "you can do this!  You can do whatever you decide you can do! I believe in you!" I want to be super patient and kind, never frustrated. And yet, sadly, I'm not always able to do or be all of those things.  And my discouragement over her difficulties riding her bike was something that Bella was keenly attuned to despite my attempts to mask my feelings.  I began to think about how we could make bike riding successful and fun again, and decided to look into an adult trike for her.  Why not take the need to balance out of the picture?  Steering and speed control were enough for her to focus on at one time.   I had to struggle against the feelings of defeat that this direction of thought brought me. Was I giving up on my girl?  Was I failing her as a mom?  

Ultimately, where I landed was this: No. I am not failing her or giving up on her.  I am empowering her to enjoy an activity that she wants to enjoy and feel successful doing it. I am finding the modifications that she needs to be able to function at her level.  And that is good. Rather than an adult trike, what we found were these amazing pneumatic stabilizing wheels meant for adults or teens with balance issues, to allow them to ride their two-wheeler with support. Tom worked long and hard to get them installed properly on her beautiful new Christmas bike a few weeks ago. 

Tonight, we went out for a ride around the neighborhood after dinner.  And when I asked her how she liked riding a bike without me having to hold onto it she said "It's great!  I can EXPLORE!" That's all I needed to hear.  I am grateful she is not self conscious about having these large "stabilizing wheels" (we're not calling the "training wheels") on her bike.  She is at an age where she is increasingly aware of the differences between her peers and herself. 

I hope and pray she will always be able to embrace and celebrate her abilities and her differences.  And I hope and pray I can have eyes to see her amazing abilities and her effort and continue to cheer her on.