Confessions of Disappointment and Disillusionment

Do you ever find yourself going along and thinking the road is finally smooth? All the therapy appointments, all the special dietary steps you take, all the ways you modify your behavior to accommodate your little one’s, is finally paying off in a steady, tangible way and then BOOM! You hit the wall?  I’m having one of those days…

I should start by saying, it’s never really smooth sailing, but the last few years have seen so much progress.  It’s been two years since we’ve had a surgery, no seizures for nearly five years, speech 98% intelligible, no one’s been sick—where we used to be regular weekly visitors to our pediatrician’s office, we have now gone nearly a year without actually seeing him (they miss us and we miss them!).

There are still daily challenges and it’s still painfully obvious that my oldest son is not going to fit in with his peers for a long time to come, if ever.  I swallow those feelings of inadequacy and focus on all the amazing positives I see in his life.  I almost convince myself that it’s all working and we can be a “typical” family with just some minor eccentricities.

Then it all comes crumbling down…

I don’t know why I try and strive (even though it’s not consciously) for that “typical”, “normal” label on our lives.  What does it really mean, anyway?  I’ve never been one who fits in with the crowd and maybe that’s why I’ve always longed to.  Maybe that’s why I long for my son to, because I know what it feels like to be “different” and to want nothing more than to be included with peers, not looked at with that puzzling “you’re an odd duck—not sure I’m ok with including you in my circle” look that kids (and grown-ups) are so prone to give.  I don’t even realize I’m doing it until something comes along that takes the wind out of my sails and I realize I was holding on to that “everything’s great just like any other normal family” ideal a little bit too tightly.

It usually hits me when I get Cainan’s report card.  He seems to be doing so well in school. His teachers tell me how intelligent he is and how great he’s doing.  I’m so proud as I watch him read short books and practice his spelling tests with him.  Then I get a phone call from his teacher asking if they can grade him on a 1^st grade standard so it doesn’t looking like he’s failing all aspects of his 2^nd grade curriculum…that should have been a clue.  So, I expected a great report card, since he is doing so great learning this 2^nd grade curriculum but he’s being graded as if he were still in 1^st grade (that’s kind of a long story as far as why he’s labeled somewhere between 1^st & 2^nd grade).  I’m being honest when I say I was devastated when his grades showed that he’s still below standard on nearly everything, even at a 1^st grade level.

Why?!

Didn’t I just say how proud I am of how great he’s doing?  Didn’t I just tell you how his teachers say how smart he is and how much he’s learning in class (their words were that “he’s a model student”!)?  Why does it matter what the standard is?  He’s not a standard kid and I know it.  I was proud of him five minutes before I go this report card—why am I so disappointed now? 

Thank goodness he has no awareness of what a report card is, what it says or what it means.  How do you tell your kid that they’re doing so great but the educational world says they’re failing?  I’m praying for a few more years of obliviousness before we face those conversations.  I AM proud of him and I don’t want to have to explain to him that a bad report card does not mean he is not doing great or putting forth great effort.  Every kid who does their best is going to be heartbroken to receive a piece of paper that says their best just isn’t good enough.  And I have to convince him that it is—because it IS.  His best is all I can ever ask of him and I’m always proud of the effort he puts forth.

And today…I was called to his school the second day in a row and the fourth time, so far, this year for something that has not been an issue since pre-school.  What is going on?  Why the big step backward?  How do you tell your brain to stop forward progress, take some big steps backward and re-approach a problem that you thought you had mastered years ago?

I know we can do it; we’ve done it before over bigger matters.  But it’s still another deflating moment when I was riding that high of everything being “normal”. 

I love my sons desperately.  I love their differences.  I love their individual strengths.  I love how parenting them has made me SUCH a better person.  It has challenged my mind, my ingenuity, my capacity to love (and not just them), my strength, my compassion…the list goes on.  And I know it can’t be much different for a parent of “typical” children.  There are ups and downs.  The wind gets knocked out of everyone’s sails now and then.  But sometimes it’s kind of nice to hear it from other parents, too—that you’re not the only one deeply disappointed by an aspect of your child’s life.

I think, sometimes, we are embarrassed by our disappointments, especially if it involves our kids.  I think the mindset is (at least mine is), that you’re a bad parent if you are disappointed in a child that does not live up to your expectations—after all, they’re your expectations, not their reality.  And your responsibility as a parent is to love your child, encourage them and teach them self-confidence, respect for self and others, not transfer your own frustration or dissatisfaction to them, much less share those feelings with anyone.  We have to keep them hidden.

And to be honest, I’m not at all disappointed in Cainan.  And I would never express that I was to him, especially over something he has no control over or ability to change on his own.  I’m more disappointed in my own expectations and thinking.  I let myself believe a myth—that there is a “normal” out there to be had and that we can somehow fit ourselves into that mold.  I know better, but I still let it fool me and I still feel the pain of realizing that it can’t be.

It’s just one of those days... I don’t have them very often but since I am today, I thought I’d share and see if anyone else can relate.  Or if just hearing about it, might make someone else feel a little better in realizing that they’re not the only ones who’ve felt the same way. 

By the time the kids get home from school, I will be myself.  I will have thought of a way to address this old/new problem and we’ll begin working on it with positive steps.  I will be grounded back in reality but I know in a few more months or even in a year or so, I’ll be back to this point wondering how I let myself be fooled again. 

It’s a roller coaster, folks (sorry to be so cliché) and right now I’m hearing that slow “click, click, click” as I climb back up the hill.  I’m hoping for a big loop or corkscrew once we reach the top this time and not a plummet.  Good luck to all of you out their riding your own coasters!