Saturday, October 21, 2017

We Will All Make It...Somehow

He sits there, eyes rapidly blinking, Adam's apple bobbing, unable to utter a sound.  Something is misfiring in his brain, and darned if we can figure it out.  Matthew is struggling recently with communication in certain moments, and we are not quite sure what is happening, but we have seen it in the past once in a great while.  In moments of stress, it is as if everything shuts down, his processing speed slows to a crawl, and nothing can be accessed.

Recently we have had this happen a couple of times, and it has been a little scary for both of us.  This last time a week ago, there were simple questions being asked that made him feel "put on the spot" just a bit, and we saw this shut down.  Rather than let it go, and knowing that with both of us being frustrated we needed to just cool down a moment, I asked him to sit at the table with me and talk this through.  He had misinterpreted my questions as accusations, and I was soon to really understand why...

"So, can you tell me what is going on?", I asked, hoping we could get to the bottom of this.

Finally able to speak, and frustrated...and probably a bit angry with me...he said, "I don't know!  It is like I literally don't understand what you are saying, and it doesn't matter how you word it!"

This simple question about internet trouble in our home had turned into something much different.

I begin to describe what I see, "You look totally blank when this happens, as if you are suddenly not even here, like you are flat.  But what you need to know is that it makes it look to the outside like you are trying hard to come up with an excuse or a quick lie to get out of something.  I know that's not the case, but others will not understand this, but YOU need to understand how they may interpret this."

"That's not IT!", he exclaimed, crushed.

And then, it was clear what was needed, and I let the tears start showing in my eyes, and then I told him through my own sobs, "Matt, I am so sorry this happens.  I know how hard it must be and you have no control over it.  I hate that you have to struggle so much!!  I'd give anything to fix this, but I can't." and that was all it took, and holding one another we gave in to the grief we had yet to really ever express but that had been building.  This is a special sort of grief, the kind of which few ever experience but that seems to be my lot in life...the grieving that occurs when bright brains don't work...can't work...despite the best efforts. 

One of the big reasons we decided to homeschool was that Matt's needs weren't being met in public school.  Through a public-homeschool alternative program we later utilized he was tested and found to be both gifted and learning disabled with Dysgraphia which is a writing disability, something that took us awhile to figure out.  What we were told at the time was that he had "maxed out" the test for spatial reasoning, which wasn't a surprise for us, and was highly gifted in a couple of areas, by 5th grade he was reading at a 10th grade level as tested, hence the reason he no longer could fit in a traditional class setting. 

But when we were told about his Dysgraphia, we were also told that he had an extremely slow processing speed.  This was not something we had anticipated, though it did answer some unasked questions.  We have always said Matt has one speed, moderately slow, and even physically if there was a fire in the house he would really be unable to move quickly.  We just thought it was part of his nature, not a real disability or issue, but more that he was one of those slower more methodical people we all encounter in life.  He was so intelligent, that we never really gave "speed" of thinking much thought, and always accepted it as part of who Matt was and never got angry with him when he simply walked through the world at half speed.

I stood there, holding him close, his sobs and mine intermingling.  I am so tired of the suffering of my kids, I can't begin to tell you.  Just when you think things are moving along well, something else comes along and bites us in the behind.  We seem to never be able to escape their pasts, their beginnings that shaped them into the wonderfully resilient, kind young adults they are becoming but also caused irreparable harm. As their mom, I just want it all to be easier, even if I can see how it has also helped them have more empathy and more understanding. 

He apologized for taking his frustration out on me, and I accepted and told him that I needed to ask him for lots of grace, as I too am at a loss.  Every single disability our kids have has been diagnosed because I took them to specialists for testing to confirm what I had researched and thought was possibly what we were dealing with, even to the point of taking Kenny to the University of Washington's Fetal Alcohol clinic.  I have had to dig, and guess, and tap my internet friends for ideas, and then beg for testing to confirm a suspected diagnosis...basically, I have sort of had to be a neurologist and special ed teacher all in one, because the diagnosis is only the first step...then, how do you best teach it?  And Dominick totally "gets" this is why I have thousands of hours logged on the internet...

And that doesn't include the role as therapist for so much heartbreak.

I asked Matt to work with me and not assume I was going to accuse him of something.  I reminded him I was doing my very best to guess sometimes if he was "having a moment" or if he was being a typical teen who, believe it or not, is NOT totally perfect.  Well, at least not all the time ;-)  I explained that he needed grace and kindness from me, and I needed it from him as well, and that it was really important for him to not view my questions as "interrogation" when he felt blameless, and instead view them as attempts to figure out what is causing the glitch, and where/when exactly it is coming into play.

We held hands, and we talked briefly about how having a slow processing speed does not mean "stupid", and that I would never, ever think that of him, but I knew at times he might be scared others would thinks so if certain things took him longer than others.  I explained that mostly, people would think that he was a thoughtful guy who didn't throw things out off the cuff, but that if he was asked a direct question and he "blanked out", that the look he gave others and the lack of response led them to think he might be trying to come up with an excuse.  I also explained how I have accommodated his slower processing speed at home for years, by giving him the chance to wait until all the others had answered the question asked, then allowing him to contribute last.  We talked about self-advocacy, and stopping in the moment to explain to others that he needed a moment longer to think because his brain moves at a slower speed sometimes.  We teased a little, wiped our tears, and knew we now had more to think about as we contemplate his future.

Driving is proving challenging for both Angela and Matt for similar reasons, it seems, and it is this slow processing speed that is getting in the way.  For Angela, she can hear my instructions clearly and interpret them, but her brain simply can  not act fast enough based upon the instructions in situations where she lacks confidence.  Believe it or not, I am teaching them all the recorder (The little instrument, yes, you can have sympathy for me now) and I am seeing it play out even there as she struggles far more than the other kids to make her hands move when she feels pressured to "keep up" or make her body do something when she has to think hard about it.  Behind the wheel, what comes naturally for many of us...things like being reasonably centered in the lane, or saying "stop here" and she can't get the instruction interpreted fast enough and then think about her foot then move her foot onto the brake peddle.  Nothing is intuitive.

With Matt, he is also struggling with processing speed, but for him it is anxiousness at doing a new task almost shutting off his ability to comprehend the words I am saying.  No joke, one time we were out practicing in a cemetery and he is unable to turn 5 mph...starting too late, not turning the steering wheel enough, etc.  I am not a "yeller" so we are always calm about it, but I said with growing urgency, "Turn, turn, TURN..." and he was able to brake, but then looked at me and I asked, "Why didn't you turn more?" and again he told me, "I literally didn't understand what you meant..." and this was the first time I think his awareness grew around his processing speed being an issue, and he was clearly a little scared.  "What else would you have me say, Matt?  What would help?  I don't know what would help..." and we determined that using as little language as possible but showing him would help.  So, I got out of the car, switched sides, and proceeded to take tons of turns with him watching, I went very slowly and explained with as few words as possible and breaking it down into steps where to begin the turn, how far to turn the wheel, etc.  Then he was more able to do so when we changed seats again.

Angela and I talked a lot about driving and other things when I took her out this week, and what others don't understand is how embarrassing it can be to struggle to do things others find pretty easy.  When your brain doesn't take in or work with information the same as everyone else's, you find that hard to explain.

And yet I am so proud of these two young adults!!  They are patient with me and themselves, they are willing to look at the hard stuff and deal with it, and not pretend it isn't there.  There is no attitude, no nastiness, no rancor.  Just moments of clarity that are hard, and then acceptance and problem solving.

No one knows how hard life can be at this stage with challenges like this, they see an ordinary group of teens whose invisible disabilities aren't always present.  Matt is flying a plane, for goodness sake!  Why can't he drive a car?  Wellllll...decisions made in a plane are allowed more time.  Turns are planned well in advance, miles ahead, and there are not distractions like kids playing in streets, other cars coming at you, road signs to read and interpret, turn signals to activite, windshield wipers to turn on, speed to watch that changes constantly depending upon the road you are on, 3 mirrors to keep an eye on while looking out the windshield.  Flying is an entirely different activity requiring different...methodical...skills.

Matt asked me the other day if I knew what "apraxia" was, and I told him that I thought it may have something to do with his inability to speak at certain moments, but that I had yet to look into it much because we were really just beginning to see this come into play.  I was pleased that he was researching things himself, and throwing out ideas.  A chip off the old block, maybe :-)

We move into young adulthood with these amazing teens, each fighting to make it on their own, each needing security to be who they are, to learn more about what they can and can't do in the world through no fault of their own.  They are working against so much, and yet continue to grow and mature.  It won't look the same as other families, it will take a lot longer and we all know that.  Others may judge, but they don't really know...they don't know how far we have come, all we have overcome, and all we still have to figure out.

But we know, and we are a team...and we will all make it somehow.

1 comment:

Thandi said...

I love you all.

My daughter's birth mother thinks my son's birth mother 'took stuff' that caused the glitches in my son's brain. He's only 2 years old. I don't know where the future will take us. I know my daughter survived multiple abortion attempts. I don't know how that will pan out later on in her life. She's only 3 and excluding emotional 'hiccups' seems ok. If I can handle the future as well as you do, showing my vulnerability to my children-especially my son-I will be satisfied. I think it helps for them to see the pain too, instead of trying to be stoic as I would want to be. It hurts. It hurts and he doesn't know that he's not fully ok. Our biggest fear is for when he is older and starts to realise. I am grateful that you are sharing these moments with all the children. All children are different. But in there somewhere, I catch a glimpse of our possible future. Again, thank you for sharing.