Continual Doubts, Constant Struggle

I won't lie, the past couple of weeks have been enormously challenging for me on many levels.  Middle of the night asthma attacks are keeping me from being well rested, and basically wearing me out...and that intensifies everything as well.

Kenny is having a really bad spell right now, and this morning was indicative of what we all face together as a family as we try to support and encourage him.  Math is Kenny's strong subject, actually really strong.  He is working above grade level and his state tests show he is a mere few points below advanced.  He took a review test today and got 60%.  Not such a big problem, as all kids have a bad test now and then.  But it's a big problem when he forgets what the math words mean, when he draws a total blank and we have one of his mental "hiccups" and he can't recall how to even approach a problem.  His writing, which was looking much improved for awhile has also taken a big dive.

As Dominick sat there at the kitchen table trying to help Kenny work through his incorrect test problems while Angela sat nearby, I look up and see Kenny begin the descent to dissolving into tears...and from across the counter my heart just cracked a little wider.  I went around the table and just put my arms around him as he cried, saying nothing, for words were not needed.

This kid...who is SO darned bright and works SO darned hard will struggle like this for the rest of his life, and on a night like tonight I feel nothing but profound loss and grief over it.  As we have worked on our little project house wondering if one day we might be living in it ourselves, we also wonder if Kenny will have no alternative but to reside there with us.  Don't get me wrong, you couldn't have a more agreeable life long companion and we would not have an ounce of resentment should that be the end result, but it would kill me to see Kenny limited in such a way when in other ways he is honestly higher functioning than many who are years older than he is.  He is a deep soul, and can make connections that others will never make, as those who know him in "real life" will attest to.  But his memory loss, the disconnect that occurs periodically, his inability to follow even the simplest 2 step instructions without becoming confused...these are huge things to overcome.

Adding insult to injury, he realized he lost his history journal, containing the entire semester's work in it.  He spent an hour and a half looking for it, knowing it has to be in the house somewhere, but it is long gone.  It's probably located in the same place his violin music magically disappeared to, that dark Kenny void that none of us have yet to find. 

I had a long talk with him this evening about all of this, once the emotion and frustration had died down.  I don't want him feeling alone in all of this, and I was glad to learn we have made some strong corrections for him even if we are not able to overcome much of what he faces.  I asked him how he felt about himself these days, and he said "I feel smarter, for sure, maybe not today but I do feel smarter than I used to."  I smiled when we talked about how his opinion of himself has changed since coming home for school and he said "I feel as smart as Matt now, but I knew coming home that he would never make fun of me and would help me.  That made it easier, I didn't have to worry about looking stupid with Matt as he always treated me like I was smart even if I didn't do well in school." 

We talked about how he IS smart, but that his brain functions differently than everyone else's, and that will require him to work harder and use tools and routines to keep him on track.  I also told him that now that he understood better how he learned and what his difficulties are, he needed to explain to others that work with him that he needed to hear instructions one step at a time, or have things written down for him.  We talked about ways he could cope, and how we would need to get creative to discover good strategies for him...but that would require him to not be lazy and actually do whatever we came up with, even if things took him longer. I also reminded him that I am right there with him, every step of the way, and will give it my all to help him succeed but that I expected the same thing from him.  He told me "I am so lucky to have YOU for a mom, I think lots of other moms would have thought I was just stupid and given up on me.  You never will, you and I are too stubborn to give up!"

As I shared with Dominick later, it is hard to know the right thing to do with Kenny sometimes.  Knowing that much of this is completely beyond his ability to fix, how accountable do we hold him?  And if we don't hold him as accountable as we would the other kids, Kenny has already shown he will quickly give in to the "I can't do it" attitude and play the "pity" card.  Yet I don't want to discourage him with unrealistic expectations.  Thankfully, all the other kids really and truly understand that Kenny sometimes just can't get it all together and it is through not fault of his own...they are compassionate and kind with him to a fault.  That helps enormously.  But knowing when to press and when to let up is becoming ever increasingly more complicated to discern, and I fear we are not doing a good job of it.

Kenny's anguish is very real, and very understandable...and we feel it too.  We don't have a clue what to do about it, no specialist we have contacted seems to be able to help.  Scans would tell us what we already suspect, parts of his brain aren't working right, but that is awfully expensive information to confirm when it doesn't lead to "how to" strategies.  What would make it easier, perhaps, would be if Kenny had global developmental delays and was unaware of how affected he was.  Instead we have a young man who is so sharp in so many areas, and clearly can see how he is not the same as others and how this is holding him back from being all he could be.  I think that alone is harder than actually dealing with things on a daily basis with him.

On another front, it is possible we may have had a tiny breakthrough with Olesya.  Two days ago we talked about her dance class, asking if she wanted to continue with it.  She had indicated early on that it wasn't what she had thought it would be, that kids there had been going to class together for several years and were not open and friendly in including her, and that she wanted to quit.  We told her we wanted her to give it a few weeks to see if things changed, and then we would consider letting her drop.  When we asked her, the immediate response was "Yes, I want to stay in class." and then we shrugged our shoulders and said "OK". 

Later that day while we were working, she told me she wanted to talk to me.  She said with tears in her eyes "Mama, I don't want to do dance class." I asked her why she didn't just say so in the first place, as that is why we had asked her in the morning and had told her clearly we didn't mind if she quit.  She said "I thought you'd get mad at me."  I laughed and told her that didn't "fly" as we had asked her a couple times "Are you sure?  You haven't seemed to enjoy it much." and there was no reason at all for her to think we would have been mad if she told us the truth.  We had another mini-meltdown as she then shrugged her shoulders and said "I don't know why I didn't tell you."

So we had another long talk about her being on "automatic", and how proud I was of her for finally expressing what she really felt and wanted.  The look of relief on her face was so obvious, and then, for the very first time I think she and I connected on a much deeper level when she looked me squarely in the eyes and said "I am so sorry Mama, I am going to try hard to let you know what I like and don't like.  I don't know why it is hard for me, but I going to practice!"  then she came over and gave me the most gentle kiss and said "Thank you Mama, you make me better all the time."  Since then I have noticed she has made a real effort to express herself, which is hard work for her, and not casually shrug off things.  I have praised this highly when I see it and recognize her efforts even if it is just baby steps.  A couple of times she has hugged me or looked at me in a more intimate way, as if she is slowly lifting the veil from over her heart.  Funny how I interpret such things, and could be way off base, but it just feels different in a way that is hard to describe.

Lots of intensity here at Casa LaJoy, enough to drag me under at moments, I fear.  No one else would see it, understand it, or care about it and sometimes I wonder if I were a different sort of person if all of this would slide smoothly over the layers of our lives.  If I were different, surely this would be easier, and sometimes I think it is I that is too intense and not the kids.  But there is growth, sure and certain, even if it is hard on the soul to achieve.  There is joy and laughter in between as well, even if there are nightmares and inner whispers.  I have thought a lot the past few days about how different moms would handle our situation so differently, and wondered if their approaches would be better.  Sometimes we are so close to a problem we can't see things clearly.

But I am the mom they are stuck with, and all I can do is my best, even if that looks different than how others would handle it.  Surely I am laughed at by others, surely there are some who would work wonders with our kids in ways I can't even imagine.  But no one would love them more, I guess that'll have to be enough.

Here's to what I hope is a decent night's sleep, and to not stepping on Joshie's head as I get up in the middle of the night!