A lot of people have asked how Bex has been recently, so we
figured we would provide an update. She
has been doing great overall! We have
not had any doctor’s appointments over the past few weeks, so we have just been
focusing on her physical therapy exercises. She has Physical Therapy every
Friday and she is making strides with it. Of course, a lot of the
responsibility falls on us to incorporate those exercises and strategies into
our daily routines and play times.
Before Bex was diagnosed with IS and she started Physical Therapy, Lindsey and I wanted her to achieve the
developmental milestone of sitting up ASAP. However,
after the weeks piled on without her sitting up, so did our frustration. Every day we would work with her and employ
typical strategies to get her to sit up.
For example, we would put her in a boppy pillow or just hold her up in a
sitting position on our legs, trying to get her to get used to it. This often failed and led to Bex getting
upset and frustrated. We were told this
is okay and babies can get mad, so keep on working hard to hit that goal. Eyes on the prize, right? Well, what if the prize keeps getting further
out of our reach…then what?
Well, of course, we then went through IS and realized she
was developmentally delayed. During our
last neurology appointment, the doctor recommended we read the book Kids Beyond Limits by Anat Baniel. It focuses on how to get the most out of
children who have developmental delays or suffer from conditions that affect
the brain. It is an amazing book and it
really changed our perspective on how to reach Bex and work with her on
things. One of the chapters that spoke
to us the most was the one on “Flexible Goals.”
This chapter focuses on how parents need to be able to
adjust their children’s developmental goals.
It doesn’t recommend throwing away goals if you are struggling to
achieve them, but making sure they are realistic. One of the big keys to flexible goals is
making sure your goals are in line with your child’s abilities right now. She recommends parents stop judging their
child’s success by standard milestones. Instead, she believes in tailoring
exercises around your child’s current abilities instead of letting standard
milestones dictate what you do with them each day. In the end, she believes this will be
more successful for the child’s development overall.
Today, after dealing with IS and losing basically 3 months
of development (the time period of when we suspect the hypsarrethmia started combined
with the duration of her ACTH treatment), we now have a better game plan for
helping Bex achieve her milestones than we did back in the spring. We are now practicing flexible goals with her.
We also both realized that most of our frustration back in the spring was that
the suggestions being given to us were unsuccessful because they were a) not in
line with Bex’s current abilities and b) were too focused on the milestone of
sitting up without focusing on the process of helping her to get there. So for example, one reason she has trouble
sitting up is because she doesn’t have enough strength in her arms yet to help
push and support her in a sitting position. Instead of just throwing her in a sitting
position and watching her struggle, we may lay her on her back and work on
having her push her arms against my hands to help build up strength. We also learned we needed to first focus on
strengthening her neck muscles before we could expect her to support her trunk.
That is one reason physical therapy is great because the physical therapist comes in with the clinical eye that
Lindsey and I do not have to help us understand where Bex’s current abilities
are. Building the strength up in her muscles may add extra time to hitting the
ultimate goal of sitting up, but in the end it plays a critical role in her
development overall.
These strategies have been working and we have noticed a lot
of new things Bex has been doing over the past several weeks. She is doing a better job of tucking
her chin and keeping her neck in line with her body when we pull her up into a
sitting position. She also has been doing a much better job of holding her head
straight and forward with less and less support from us, showing that her neck
and other muscles are getting stronger. She is able to play with toys
while being supported by us in a sitting position for longer periods of time, which shows that she now has enough control over her neck muscles that she can reach for things while in the sitting position. All of these
things may seem like small feats for an average child, especially one close to
11 months old. However, for us they are
signs that she is progressing and starting to figure things out. If we were still judging Bex's success by standard milestones, we would feel defeated because she is not sitting up independently yet. This is why Baniel emphasizes the importance of celebrating all the small steps and successes that must occur while working toward the ultimate goal. Changing our outlook on how we measure progress is important because it makes both us and Bex feel more successful!
I will circle back to the book and how Baniel made the
comparison of a child’s development with the golf rule “Play it as it
lies.” For those of you not familiar
with this rule, it means a player must hit their ball wherever it lands, no
matter the spot or the obstacles around it.
She states in the book regarding this golf rule, “As it applies to
Flexible Goals, it means connect with your child wherever she is right
now. Discover what your child is able to
do at this moment, and seek ways to
tug at the edges, thus helping your child’s brain find its own unique path of
development.”
When it comes to Bex, we don’t get a club-length to move our
ball to a better spot to improve our next shot.
Why that can be frustrating, it also means we learn how to improvise and
tailor our swing (i.e., our Bex’s exercises).
The goal may no longer be to birdey the whole, but to save par. In the end, the hard work will pay off.
