Thanks to those of
you who have checked in with me about my absence from the blogosphere. I want to assure you everything is fine; I’ve
just had plenty to handle, and not much steam left over for writing the past
few weeks.
In looking at my
white board (which should be called a neon board at this point; you should see
the amount of colored writing on my “to do” list right now!), I thought I’d
outline some of what I balance on a regular basis. Here are the categories, as they present to
me:
1. School
Like most kiddos,
mine headed back to school right after Labor Day. While the initial freedom of having him out
of the house for a few hours each morning was intoxicating, I knew it would
fade as he started running into challenges and the phone started ringing. Sure enough – that happened at the beginning
of week number three. At that point, the
honey was definitely off the moon.
After navigating
IEPs for the past few years, I’m used to how to work with the staff members
when these phone calls happen, usually beginning with checking in to see if
they are working with the plan we’ve outlined in his IEP. Often, when things start going well with
kiddo, they forget about the pieces we’ve plugged in proactively; so I need to
remind them why we’ve asked for the assistance indicated in the paperwork, and
ask them to stick with it, even when they think he doesn’t need it. For example, we have a few sensory breaks
planned for him each day. When he’s
doing well, the staff may not give him the break because “He didn’t need
it”…until later, when he melted down and threw something because his system was
overwhelmed. Fortunately, we have a
fantastic team of people working with us in his school, and they have been very
open to how we advocate for our kiddo.
So we have good
information on kiddo’s progress, I schedule regular classroom visits to observe
him and see how he is doing in his school environment. Our first visit will happen later this week,
and I make a point to be in at least once each month. Sometimes, as people get working with kiddo
(usually once they’ve had an engaging conversation with him), they forget he
has CP and start asking him to process too much, more quickly than he is
able. By watching his interactions with
peers and adults, I can help spot areas of support that are often simple tweaks
and make suggestions to help everyone involved.
Also, since we are
working toward kiddo’s transition to full days over the course of this school
year, I am in the process of scheduling regular meetings with the IEP
team. While we won’t review the full IEP
at every meeting (if you don’t know, they’re multiple pages long and a lot of
work for all involved), we will check in with all team members who are working
with kiddo to get their perspective as we seek to support him in fully
integrating into the classroom. With 10
people total (including hubby and myself), this is no small undertaking, since
we will meet at least 2-3 times per semester.
Our first meeting is scheduled to happen in two weeks.
2. Insurance
Oh, my, is this a
can of worms! I can’t even begin to tell
you the fullness of what this has involved without multiple posts, so I’ll
summarize as best I can.
To date, I am
working three separate issues with our insurance company:
a.
Reimbursement
for kiddo’s psychological therapies since that provider now has the
“appropriate” license (one they recognize).
We see her on an almost-weekly basis, so this is a long paper trail that
must be followed on a regular basis.
Thankfully, it is one that is now working smoothly, and to our
advantage.
b.
Establishing
the chain of referral that got us to said provider, because it will
significantly increase the amount of reimbursement that will come back to us. Seriously, I’ve been working on this once
since the summer, and we’re tracking records back as far as 2009 to get this
handled. Yay – more insurance hoops to
jump through! (Can you feel the
sarcasm?!)
c.
Advocating
for reimbursement of therapies that have been sorely needed, paid for out of our
savings, yet continually get rejected for repayment. This one has been ongoing for over two years
now, and I had to take the summer off from it because I was so exhausted.
It
seems especially ridiculous to me that an insurance company will pay for medication
that hasn’t been fully studied in children the age or size of kiddo and may, in
fact, have dangerous side-effects, but they won’t pay for non-invasive,
life-strategy-type therapies that are actually making a difference. (I can feel how heated I’m getting even
typing this much, so I’m making a note to myself to flesh out a full post on
that another time.)
3. Grants, Scholarships and Respite
We were fortunate
to receive a scholarship earlier this year that covered kiddos sensory camps
for most of the summer. The same
organization is running another round of applications right now and we are
eligible to apply again. That, of
course, means more paperwork – which happens to be due by October 1st.
The application
itself isn’t difficult to fill out; it’s the part where we’re asked to tell our
story and why we are applying for the money that is tough to navigate. It’s challenging enough to have a child who
has been referred to as “not sick enough” to receive certain insurance coverage
or funding, but then to tell strangers our story, over and over, trying to
articulate the challenges that come with our situation…well, sometimes, it’s
overwhelming. And there is no guarantee,
once I’ve put my heart on paper, that we will receive any money. I have sat here on more than one occasion in
tears, as I dredge up the challenges and difficulties that our rainy-day-turned-monsoon
has brought.
And I’m always on
the lookout for respite care. Truly – if
you know of a resource that is low- or no-cost and reliable, I would love the
referral. Our time to recharge,
reconnect and rest is so important and it doesn’t happen if we don’t plan for
it. So I’m always searching for new ways
we can make that happen and stay afloat financially.
4. Work
I have the
privilege of doing something I love, in an environment I adore, with co-workers
(who are also friends) who support me in a manner that I cherish. Seriously – I get paid to do something I
love!
And, there is a
lot of paperwork that goes along with my job.
I just finished one round of the course I teach at the end of last week,
and I’m working on finishing the paperwork I need handled for completion. My next round of the same course starts
October 1st so, while I have a week of “break” in-between, there is
also a fair amount of prep paperwork that needs to be handled for this one as
well.
5. The Unexpecteds
I’m sure you all
deal with this category too, right? The
stuff that happens that you’re not planning on, but need to handle because it’s
right in front of you? Yep – I’ve had
quite a few of those over the past ten days or so.
Both kiddo and
hubby have been home with some type of head cold for a few days, and I’m
feeling it creep in on me as well. Kiddo
was well enough to go back to school today, but hubby is still home (and has
already called in for tomorrow) so having extra bodies around during “my” time
has been a bit frustrating.
And our financial
advisor needed to move, so we’re in the process of getting established with
someone new. No big deal there – just
more paperwork, establishing accounts, figuring out how to sign in to a system
that won’t let me in and other computer joys.
I’m sure I’ll get it figured out.
So, if you’re
still with me, I hope you can understand why my cyber-presence may be a little
sparse right now. And, lest you think
that I’m all work and no play, let me reassure you that I have plenty of fun,
too. I play in a professional handbell
ensemble on a weekly basis, pick up my trombone with a church group a few times
each month, and am establishing a regular activity routine that I enjoy, including
walking with the dog, yoga, and some indoor, water-based activities.
At least the last
of these doesn’t involve paperwork. :)
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