Thursday, October 4, 2012

Understanding Big J.


The thing about this learning disorder is that I'm never quite sure if this is going to be a day when we remember how to read the word "also".  Or, if this will be the day when it will be his breaking point; the thing he struggles with and cries over.  The word that destroys his confidence.

Also.  Or could.  Or their.  Or friend.  Or bakery.  Or machine.  Some days we sail along in the sea of the English language, and others days we start at the sound that "h" makes and we learn it all over again.  And it's agonizing, for both of us.  As far as I know, the silent "g" hasn't killed any seven-year-olds who are learning to read--but this was also once the case with lawn darts and swimming pool high dives and crack cocaine, and I can't help but think that we might be preemptively saving a few dyslexic lives if we just cut out all this "i before e" bullsh#!.

Many of you will remember that Big J was diagnosed with ADHD last year, at the start of first grade, when it became clear that his reading skills and his confidence were suffering.  Medicating him has helped, and before he was diagnosed, homework or reading practice was TORTURE--because, at the end of the day, the poor kid couldn't concentrate on all the letters and sounds and blends he needed to form words from the chaos he sees on a page.  It's better, but it's still difficult.  Mostly because he is reading from a standpoint of memorization, and that can only get him so far; and when he can't pull it out of his head, he collapses in a puddle of tears.  We are struggling in that space before he acknowledges that this is a problem, before he understands that challenges build character.  Before a diagnosis, when he is still fighting for me to make this EASIER, and I am constantly battling him to understand that this fight is going to be long and hard.  He still exists in the place where guinea pigs and Halloween candy solve EVERYTHING, and that's a tough place to be when you are probably dyslexic and don't yet understand the importance of being able to read.  

Lots of days--most days even--there isn't much of a fight.  Most of what he brings home he's already read in school, and he's generally memorized it.  This is *slightly* distressing for me, as I know he hasn't really gotten this far by learning his sound blends, and to me it just doesn't make sense--in much the same way that I am VERY leery of learning math with a number grid.  I could obsess over it, except that I am domesticating a rodent and washing socks (freaking socks) so that I don't have to search the laundry basket for a previously worn, but less offensive pair for the boys to wear tomorrow.  But this house of cards is always one word away from crumbling, because at the slightest hint that he read a word wrong, Little J will break.  He'll sound it out (slowly).  He'll try to blend it together.  He'll make up words.  He'll finally get it, and we'll re-read it, and he'll forget.  And in two minutes, we are in a deep, dark hole that he can't get out of.  

I'm never sure what to do with that moment.  To tell him the word, or make him work on sounding it out.  Or drop it all together.  I will tell you that my response is always to make him work through it, and to wait for him to stop bawling his eyes out over it.  He HAS to get this.  He HAS to learn to read.  I might have to wait years, but he HAS to get over how hard it is to read the word "though", because in the scheme of life problems and household rodents, this CANNOT break him--or else it will not speak well of his future ability to handle toddler vomit in a non-machine-washable Halloween costume.  I'm also not sure of how to build his confidence, without believing that he can do this.

I suppose I am having minor panic attacks over this, because second grade, in my opinion, is the beginning of independence.  On curriculum night at school a few weeks ago, Big J's teacher walked us through the start of their day, getting themselves organized and completing a set of tasks and school work before their lessons officially begin.  He's given a number of the day (typically something like 264), and asked to write the number before and after it; add 10 to it, subtract 10 from it; write it out in an equation, write it out in word form.  Is he getting lost in all of this?  Does he sit there and daydream for the first 40 minutes of the day?  Have his ADD meds even kicked in enough for him to remember to hang up his backpack?  Sometimes, I'm not sure.    

There is perspective in this--and it is that Big J, in all seriousness, should be dead.  And for the first four weeks of his life as a CRAZY preemie, he practically was.  He was one pound and eleven ounces, and his brain was BLEEDING.  He didn't breathe on his own, without a ventilator for NINE weeks--and even after that, he was on oxygen for six months.  There were surgeries and medications strong enough to sedate farm animals.  This kid should probably have a trach tube, a feeding tube, bowel issues, severe asthma, a compromised immune system and cerebral palsy--instead, he has a learning disability.  

We are SO lucky.  I get that.  But I have always hated seeing my kids struggle.  To breathe, to eat, to walk, to read.  To figure out what number comes after 264, and to write that number in the correct order.  

It's tricky, because we're new here, without an IEP, or a medical file three inches thick--and we all want to give Big J the benefit of the doubt, that he'll catch up, that it will all click, that he just needs time and a little bit of help.  But sometimes, don't you just know?  That it's not just ADD, that he's hanging on just below what is expected at this level, that he could doing so much more if someone could understand his brain and how he thinks?  I really just need someone to tell me how he works, which, if you think about it, is no different than any other mom on the planet.  

Sometimes this parenting gig is really hard.  



 

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