Discussion with the Neuropsychology Team at CHB

This post ruins the chronological order of the blog, but it's important, so here it is...

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 told us at the outset that the cognitive tests showed that Mairead has cognitive skills that are well above average.  They assured us that we do not have to be concerned about that- that she is a very bright little girl.  Although we have always known that she is bright, it was certainly reassuring to hear it from these doctors.  However, they also said that “this is a child with a major neuropsychological disorder.”  I think that somewhere in my mind, I have this idea that if we do all the right things, she will one day ‘snap out of it’ and be cured.  That her brain will work just like everyone else’s, and we will be able to see all that is ‘hidden’ by her disability.  The phrase, ‘major neuropsychological disorder’ does not align with that little fantasy, so even though I know it’s not real, my bubble of denial was burst just a little bit more.  This is not to say that I am resigning myself to that fact that her life will be in any way limited or less wonderful.

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.

 The doctors were encouraging in saying that she IS very bright and IS good at compensating, so she will be able to achieve a great deal.  They also complimented Dave and me in saying that the work we have done with her so far has been excellent, and must have been an “Herculean task.”  It has been, for us and for her.  What she said resonated with me and had me feeling a variety of emotions. She said, "Sitting here talking with the two of you (me and Dave), I see two people who are on top of things, who are optimistic, and who have a very positive approach. You seem happy and healthy and put together. I have to ask you, though, how you are doing with all of this because raising a child with needs such as these must be exhausting."

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.

 Thank you for reading all of this—it means a lot to us that so many of you are so invested in her.