Ok, so this is going to be long and complicated, so
please bear with me. Thanks to the many
of you who have sent messages asking how things went at our appointment, and
who are so genuinely supportive of our little girl. I’m sorry it took me so long to get you the
‘recap,’ but it was just so much to process, and it’s difficult to summarize it
all. I’ll do my best.
First, the doctors (neuropsychologists) who did the
assessment and who met with Dave and me were incredible. They were insightful, knowledgeable, honest,
and invested. We really felt like they
‘got it’ and saw Mairead for who she is.
Our discussion with them was one of the best appointments we have ever
had regarding Mairead because we could tell that they were seeing what we see,
and that they know how much help she needs, while also recognizing her
strengths. They explained their findings
clearly and considered our input carefully.
It really was a ‘discussion’ and not them talking ‘at’ us. So, it was incredibly valuable to us.
They explained a lot about how the brain works normally,
and about how her brain works, which is not ‘normal.’ I won’t go into the science of it all, but
basically the way Mairead thinks is very different than how anyone else thinks,
and likely always will be. Another term
for the infarction she suffered to her brain is ‘insult.’ Though that’s a medical term, it seems
fitting for her because this insult hurt her brain and changed the way she will
think forever. If learning and thinking
happens in a spiral for all of us, Mairead’s spiral has a major ‘hole’ at the
bottom, and she will forever be compensating for that. Her ‘spiral’ will never fully recover. The doctors said that one way to look at this
is that though Mairead will be considered ‘learning disabled,’ it’s truly more
of a ‘thinking disability.’ She can
learn just about anything, but when she has to engage in true critical
thinking, she is going to have problems.
She can learn Topic A and Topic B, but when you ask her to synthesize
those topics, to apply them, to analyze them, to think critically about them,
she is really going to struggle. This
will likely become more obvious as she approaches third or fourth grade when
concepts are more difficult and more abstract.
We have always known that when something is black and white, she’s
great. When gray area comes in, she is
lost.
One reason for this is that one part of her brain that is
not working well is the part that manages selection. An example- last year, one of her teachers
wanted to conduct a little ‘experiment’ with Mairead in terms of her self-help
skills. So, the teacher gave Mairead a
page to color, and then sat her at a table and walked away. There were no crayons, pencils, etc, on the
table, and the teacher wanted to see if Mairead would know what to do. She didn’t.
Mairead sat there for several minutes looking anxious, but never getting
up, never speaking, etc. The doctors
explained that this is likely because her brain did not know what all of her
options were, or how to select one. This
is probably also why she does not like playing soccer, but does like being a
goalie. One the soccer field, there is
chaos and she is expected to select the appropriate action. But, she can’t. When playing goalie, there is one clear
selection- stop the ball when it comes to her.
That’s it. So, she is comfortable
in that situation.
Now, Mairead can learn most anything. So, the teacher showed her where the crayons
were and Mairead got to coloring. If you
sat Mairead in that same situation again, she would be able to get up and get a
crayon because it is now a learned activity.
What was difficult about the conversation is that it is
becoming more and more apparent that as hard as Mairead has had to work so far,
she has a tougher road ahead. Everything
is going to get more complicated.
Academics, sports, social situations, everything. When the doctors explained the part about her
not being able to manage ‘selection,’ it made so much sense. This is why she struggles socially. There is no ‘right’ thing to do, and
conversation, play, etc, is not really a ‘learned’ activity because it changes
all the time. Playing Simon Says, no
problem. There is no selection or choice
there. Playing pretend, big
problem. Too many options. This is also why she has had motor planning
issues. It took Mairead a VERY long time
to learn to dress herself. We thought it
might be because of her gross motor skills, and while that is a small part of
it, it was more because she could not select the right steps in the right
order. What comes automatically to most
people will come to her very slowly, if at all, and has to be taught. This is why whenever we directly teach her
something, she learns it. But, if there
is a new situation or something we really can’t ‘teach,’ she is at a loss.
The doctors will now write and send us a very detailed
report with all of their findings. The
report will include a summary and recommendations, which will be very helpful
to us, to teachers, coaches, or anyone else who works with her. This kid is going to need a LOT of support
from pretty much everyone around her. We
have been lucky to find that support in so many friends, family members,
teachers, and other adults who work with her.
But, things will likely get more difficult for all of us as time goes
on. Also, Mairead’s combination of
natural intelligence, ability to compensate, and happy personality belies how
much help she really needs. An adult
might look at her and see a happy kid writing her little sentences, and figure
that she is doing just fine. That is far
from the truth. Her brain is working
overtime just to manage the ‘black and white’ of life. The ‘gray’ is still out of reach.
Here is what was going through my head...
1- defend Mairead a little and say that it's not that bad- it's easier than it was two years ago, she makes it all worth it, etc.
2-Agree that yes, it IS exhausting. That every second I am with her, I am hoping for some magical breakthrough. Or I am working on something with her, that I treat every moment as a 'teachable' moment. That I have to prepare for something as mundane as a birthday party by taking 10 steps beforehand to make sure she is prepared. That I spend time researching, reading, talking to professionals, etc. That at times, I can let myself be consumed by this journey.
3- I might cry a little because someone is realizing just how hard this is, and is hoping that we are ok with it. I mean, this is our life, and we are grateful for it, and we are happy. But sometimes, is is Just. So. Hard. And having someone acknowledge that fact, and realize how we are working is just huge.
It struck me for a minute that I don’t really think about how hard it is on a day to day basis. And, it's not like I never realized this before, I guess I just didn't realize the degree, if that makes sense? As any mom does, I have pretty much given myself and my life over to my kids. Dave has, too. Yes, I have friends, hobbies, etc, but not nearly to the degree that I used to. Our kids are our focus and our world now. This is especially true of Mairead. Everything I have, I have given over to what she needs. She requires my strength, my patience, my love, my understanding, my advocacy, my help, my intelligence, and my energy. Again, this is true of every child, but is exponential in the case of a child with SN.
I feel like at this point, we are implicitly and explicitly asking
everyone in her life to show some degree of that investment. It’s hard to know that we are sending her off
into a world where not everyone is willing or able to see all of those
teachable moments, or to even realize that she needs to be taught
something. I’m grateful for the
wonderful professionals, parents, and other adults in her school community, and
I’m hopeful that they will see the amount of work that is going to go into this
kid, that they are willing and able to put in that work, and that they can see
that it will be worth it one day.
When I get the report, I’ll update with more specifics and probably a much more clear
summary. I’ll also share the
recommendations they make so that anyone who knows Mairead and wants to help
can be aware of what might work for her.
Also, I know that many of you (teachers, SpEd teachers, SLPs, parents of
non-NT kids, etc) have a ‘professional interest, too. The team who evaluated her was very curious
about her situation as well, and found her fascinating. They said they consulted a myriad of
publications to try to learn more about how her brain might be working and how
to help. I like to think that she pushed
them to go the extra mile for her, and I know that we always try to do that as
well. She can bring out the best in
people, and we know that she has an impact on everyone who knows her.
