Sunday, May 26, 2013

Suffering and Blessings

It is 2:30 am, and I am not awake in some sort of Diet Coke infused haze.  I was asleep for several hours and awoke only to find myself unable to go back to sleep.  There were thoughts swirling so fast, for some odd reason, that I could not shut it all off and finally gave up, got out of bed and grabbed the laptop to write a loooong catch-up post.  It seems that though I know shorter posts are more easily read, I need to write when I can right now.

I have not been very prolific in the past several weeks, other than our trip.  Since our return, I have been bogged down with several things, and I think only tonight I realized that some of that could be categorized as Heartache.  Between the split of our church, our school's charter application and resulting job losses and pay cuts, and Kenny's testing and meetings, it is harder right now to be lighthearted.

I haven't had the energy to write, as I am writing sermons or "sermonettes", church bulletins, and working to lead worship for the next few weeks.  It is an awkward place to be in at the moment, as our pastor moved with us to the new congregation we formed, but needed a break after stepping out of one thing and into another.  I willingly volunteered, but I had no idea how hard it would be for me.

I am not a story teller, which any good preacher is.  I am not seasoned, professional, or comfortable with writing or public speaking.  The blog doesn't count, it's a diary of sorts, and only by happenstance ended up for public consumption.  Trust me, there is a HUGE difference between writing a family blog post, and writing a cohesive, Spirit filled, articulate sermon.  I just can't do it.  Contrast my efforts to what our folks are used to in our pastor who is actually quite gifted at it, and it makes it very hard for me to walk in with any sort of confidence whatsoever.  No one would ever say anything, and I do know my efforts are appreciated, but we all know that I am merely a placeholder for a few weeks, definitely not a "draw" for others.  I don't have the capacity that some do with themselves, to not be critical of my every word and misstep, which also doesn't help.

And it is so, so hard.  I labor over even the smallest things, putting in hours more than an experienced minister ever would.  I just don't have the skill set for a lot of this, and crafting even something as simple as the order of the worship service is something that takes me more time than it ought.  Trust me, folks, if you attend church regularly, your pastor has a much harder job than you ever imagined...even just with what you see on Sunday mornings, let alone with what goes on behind the scenes in a pastor's week.

So part of the reason I haven't posted much is that I am sapped of writing "mojo", and don't have the mental space for it much at the moment.

There has been sorrow over the split as it happened while we were away on our trip, and grief over the ones we left behind as we did what we felt called by God to do.  Years long relationships were severed, which is never easy, but is sometimes inevitable and necessary.  However, it has the feel of a divorce, and it is painful to be part of something like that.  I've been fortunate to have but a few "divorces" in my life of friendships that died slow deaths or came to abrupt endings as the realization arrived that it was unhealthy to remain connected.  It's never been something I've done lightly, and it always had residual effects that lasted a long time.  This is no exception.

Aside from church, it is very difficult not to be a little heartsick over Kenny's brain.  We had his IEP (Individual Education Plan) meeting on Friday, which was actually the first one I left without crying.  Finally, people have seen what we see, and they are agreeing there is a lot there that didn't first reveal itself.  That's great, and I am grateful beyond words that we have answers.

But...we have answers...and they aren't pretty.

Kenny tested in a couple of areas only 2 points above what would be necessary to be a candidate for services from "Community Options", a local support services group that offers help to the developmentally delayed and mentally handicapped.  In fact, with the entire body of evidence gathered at this IEP, they said that he would likely still qualify.

Kenny's IEP was changed to include far more than "speech only", and he qualified as firmly having ADD, and I was told that under the full gamut of the "Speech and Language" category, he qualified in  every single sub-category with the exception of "stuttering".  Doesn't that explain a lot about how hard we have struggled?

Kenny is severely developmentally delayed in speech and language areas.  He is 14 1/2 years old, and he tested in almost every area as 9 years old, with one coming in at 7 years old.  The reason Kenny has fooled everyone and been able to compensate so well?  He IS bright.  He blew everyone away when in the midst of scores that low, up pops up two that were a huge surprise...word definitions and usage.  One of these tests measured him at 15 years old, and get this, one at 21 years old.  His speech therapist noted that there was no doubt about those results either, and that he had obviously been in an environment that flooded him with high level language, as he was able to use it effectively and appropriately over and over again in verbal situations.

His auditory processing tests revealed even more.  He can not take in information that crosses over to the other side of his brain well at all.  When it came to hearing two different things going on around him in testing, as they put different input into each ear, it sort of cancelled it out and he took in almost nothing.  So imagine being in any room with more than one conversation going on...and Kenny thinks he is picking information up correctly but has no clue he is wildly off base.  When I asked them to translate numbers into a scale that was meaningful to me by asking, "What level does this put him at versus the average?  Is he mildly affected, moderately, severely?", his audiologist said, "profoundly severe".

The good news?  Yes, there was some in the mix.  His IQ has jumped up 20 points since his last test 3 years ago, when we first started homeschooling.  The 7 other people in the room were astounded at that, and said it is literally a miracle that with what they have seen, he still managed to score at "proficient" in every area on his state tests.  However, as his school psychologist pointed out, he is proficient at a 5th grade level...at 14 years old.  Not at a 9th grade level, as he would be at had he not been held back so far.

He IS proficient at a 5th grade level though, and he IS reading at a 5th grade level mostly, and considering where we started at 3 years ago, I have to convince myself that it is a huge success.

The heartbreak is about so much more than scores on tests though, for I know that is not who Kenny is.  No kid is.  But imagine having your 14 year old son sitting in the room with you hearing all of this about himself.  At his age, they want the young people present to start thinking about their future.  In fact, I had to push back several times as they kept saying that when he turns 15, the conversation around the table starts to turn toward job placement. I made it known firmly that for a child going into 7th grade with his challenges, that is inappropriate to push at this time, and would be for at least the next couple of years.  That didn't go over so well, but some understood what I was saying.

The suffering comes into play when his speech therapist noted on one of his test results that Kenny's response to having to do one of the tests was "the other side of Hell" because it was so incredibly hard for him, and disheartening.  The suffering comes from having your child hear first hand that he functions at a 9 year old level.  The suffering comes from having him look you in the eye afterward and sincerely ask, "Mom, do I have a future?  Will I ever be able to have a job and a real life?".

Yea, there has been a lot of heartache around here lately.

What totally got me after we got in the car to leave after four hours of meetings and reports was Kenny's pride in me.  Oh my gosh, it was so sweet!  I asked him how he was feeling, as I knew it had affected him in deep ways.  This kid is amazing, and so worth fighting for!  You know what his first words were? "Mom, it was so cool to see you in action!  All these years I have only heard after you came home how hard it was, but I had no idea what was really going on.  You are so tough!  They think you are just a mom, and you were very polite, but you showed them they needed to treat you with respect.  I saw how they were at first, trying to just blow you off a little, and you kept stopping them to force them to explain things to you."

At one point early on, I had to remind the people around the table that they needed to remember that I was not just the mom, but the full-time educator who needed every ounce of information to work with my student, so they needed to give me fuller, deeper information than mere summaries of testing.  I wanted to see graphs of scaled scores, and I wanted explanations of tests administered beyond two word titles, so the test scores would have more meaning for me.  It seems Kenny was impressed by this.

Kenny also added, "I never knew what you meant when you came home and said these meetings are so hard.  Now I know how hard you have to fight for me, and Matthew, too.  You have a harder job because they don't listen to what you are saying or asking, and then you have to learn enough to prove them wrong.  You kept showing them their own reports when they didn't believe you.  You must be so tired after these things!  I don't know how you keep it all straight, Mom, I never could."  Going into an IEP meeting with a file 2 inches thick is the norm these days.

Then he said, "I am so lucky I got you for a mom.  You could tell they don't get many moms like you in there.  I think I always knew I was lucky, but today I saw another reason why I was even luckier than I thought.  A kid like me needs a mom like you because you could just say 'OK' to anything they say and be intimidated, but you aren't.  I think God knew exactly who I needed in a mom and dad."  Yea, my heart melted a little bit.  Kenny always has the power to do that.

Tonight though, I realized there was more suffering going on than I had ever acknowledged or realized. It's me.  I am suffering.  I suffer every time I see Kenny struggle day after day.  I suffer when I see Matt struggle with the simplest writing tasks.  I suffer over and over every time Olesya speaks and she stutters so horribly, or when she can't figure out something with math, money, timelines or a clock.  I hurt for my kids, and I don't get to escape seeing their challenges by sending them off to school to be "someone else's problem to deal with" and expect them to come home and be "fixed".  I have to see the look on their faces when they find something impossible that they know ought to be simple at their ages.  And as Kenny's therapist even noted in her report, "It is very painful to see the look on Kenny's face as he works so hard at something that is impossible for him."

The way I suffer the most though is something I am not at all proud of, and have never admitted.  A friend who knows me very well wrote me a lovely email today.  She is a retired teacher, and someone I greatly admire.  She nailed it, though I never have admitted it or even maybe consciously realized it.  I suffer every single day from the repetition, the frustration of things not sticking, the knowledge that some things won't stick no matter how much I teach it or how hard I try.  Try teaching phonics to a kid who is 14 and still struggles to read fluently.  Or heck, try teaching him his phone number yet again, or THE STINKING MONTHS OF THE YEAR!!!!  Yes, when tested, he never got them right, despite being asked four different times.

I am ashamed of myself for even saying how much that drives me bonkers.  I am ashamed of how frustrated I get to have Matthew STILL capitalize words in the middle of sentences, or read them back and they make no sense whatsoever.  Yes, we make progress, and yes, the kids are obviously learning a lot.  But there are days when I have to work extra hard to keep my inward groans from becoming audible.  I hadn't given this any thought at all, as it is just my job, and of course I love the kids all to distraction.  But this email made me stop and really think about it.  Kenny's speech therapist also said something that was along this line as well last week when talking about Kenny's incredibly slow processing speed.  She said, "This must be really hard for you at home, because Kenny is processing information so much slower than anyone else, and he has a mom who processes information much faster than most people do...that makes that gap huge!"

Then I suffer because I am never sure when it is time to give up on remediation, and when it is time to accept that compensatory strategies are all we have left to work with.  How do you know?  How long do you continue to try and get your child's brain to work correctly?  And then, because you are 100% responsible for their entire education, will others judge you later because your kid can't do something as simple as spell correctly?   Homeschooling multiplies that concern, Big Time.  I know I shouldn't care what others think, but sometimes it is hard not to and homeschooling has its own baggage and preconceived notions anyway.  People are already trying to "catch you" not doing a good job so they can point out why it is such a bad idea. I get that all the time, most homeschoolers do.  Looking at our kids, most people have no clue how hard all of this is, as they present as reasonably bright, engaged kids...which they are.  I had a friend speak to me on the phone this week and she brought up the kids.  She has known us and the kids over a year, and was stunned to learn of the challenges we face.  She said she never would have guessed, and that her experiences with Kenny had her wondering if he was gifted, and she was dead serious. I suffer every time we go someplace where Kenny has to offer his address or phone number, and I try not to step in and give it for him, but he inevitably screws it up.  Then I get "the look" from the person getting the information, as if I am an awful mom who hasn't taught her kid anything.

Probably the worst part of it all is suffering from feeling like I have no right to admit all of this, because I do know how incredibly blessed I am.  I am blessed a million times over with such thoughtful, considerate, hard working, decent children who treat us with the greatest of respect and open affection each and every day.  They are, indeed, any parent's ideal in so many ways.  I know we are blessed to somehow be able to manage having me home to homeschool, which has only been God's doing as on paper I still haven't figured out how that happens when the bills come due each month.  I am blessed that we are getting answers, that the puzzles are slowly being figured out.  But it's probably not wise or healthy not to be honest about how hard some of this can be, both intellectually and on the heart.

So, it's been a  long, hard few weeks, but then the joy always exists in the middle of it.  When Matthew was told his Honor Guard practice for Civil Air Patrol might  move to Saturdays for a couple of months, we talked about it and he said, "I don't want to miss out on family time.  I'm not going to do it if they do end up moving practice."  How many 13 year olds feel that way?  That's a great joy to me.

More joy comes in learning something new.  We have been working on a couple of projects, and have more in the works, so let me shut up and share some photos!:


We are working toward the Congressional Award with the kids, which has 6 different levels.  Each level involves development in different areas of personal growth.  One is to learn something new, and put at least 15 hours into the project.  So thanks to 2 different friends who responded to a Facebook post and donated them free, we have 3 CPU's that are going to be torn apart and rebuilt as the boys learn all about the inside of computers.  We are using a 4H curriculum and Dominick is handling that one :-)  Free CPU's and Dollar Store tools, and we are set!  The girls are working on another facet of computers with me, as they use another 4H booklet to learn about files and organization, what the internet actually is, how to change screens on a computer, and other such basics.

We spent the day outside working on a few projects, one of which didn't quite turn out as we had hoped for but still will be OK.  I have been fascinated with pallet projects I have seen online, and one Dominick and I both liked was to make a planter out of them.  It was supposed to be upright, but we learned we couldn't afford enough plants to have it all hold together and keep the dirt from falling out, so we altered it after getting into it and just made it a different sort of flat planter out front.  We had fun doing it!





Grubby Goofy Girls!!





Angela discovered she really likes gardening, but mainly flowers!


He is much bigger on here than he used to be!  Dominick used to have him sit with him when he was 2, and Matthew always loved it!


Taa daa!!!!  Finished flower garden.  Now we'll see how fast we can kill it!

Josh was helping inside part of the time, putting together our new carpet cleaner!  He is always the first one to clean up Sunny's messes, so I thought it was only fair that he get to be the one to have the fun of putting it together...which he did all by himself!  Go Joshie!



Kenny wanted to use it...



After all the work was done, we had Chinese food, with the boys working in the kitchen learning to make chicken fried rice.  Angela had ended her day by surprising me and cleaning up inside the house while I worked outside with Olesya.  I came in an hour later to find mopped floors, a spotless living room, and cleaned kitchen counters!  She said, "You were having fun outside, but I knew this had to get done, too, so I thought I'd do it."

So blessed...always being reminded daily that it is hard, but it is worth it.  Sometimes admitting it is hard helps though.  

5 comments:

Anonymous said...

Hey Cindy,

Just wanted to let you know you are not alone. Glad you have the blog to share with us. Good for me to know I am not alone too. Not easy work, but totally worth it.

Robin Gillis

Writer200 said...

Mrs. Cindy, trust God. Just throw ALL those things you listed in the post on Him. He wants you to.

Also, I want to send some long distance hugs your way. Church splits are messy..... and so sad. Even though I'm fairly young, I've seen & experienced several. It's stunning, heartbreaking and frustrating to deal with, but I believe God allowed it (in my situation) so that we could grow in agape love. Now, years later, we have slowly begun building relationships again between the formerly broken apart.
My pastor has been teaching for about 19 years and he consistently has said over the years, 'If it wasn't for God I would be up here.' In himself, he doesn't like to be "onstage" but God uses him in a very powerful way.

Patty said...

Thanks for writing. I can so relate. We moms do truly suffer as our children suffer. it hurts a lot. And yet we are so very blessed...a tough combination of truths to sort through!

blstmama11 said...

I stumbled upon your blog because of your post about adopting older. We adopted our DD just before her 14th birthday. My heart goes out to you as our 7yr old bio daughter has many of the same problems as your son. I would love to share some resources we have found helpful if you care to email me at rohrerd11@yahoo.com

Blessings ~ Denee

Ohiomom2121 said...

Dear Cindy,
We adopted 2 FAS cuties, and are struggling with many areas in the same region...the brain. Although I appreciate the therapies you are describing, middle of the road therapists are not yet ready to start actually "fixing" broken brains. But there are some things geared toward that. Neurofeedback is one, and as I have advised before, when the kids are young adults maybe they can work to help pay for it while still living at home. One study showed cognitive gains of 9 to 26 points on IQ tests. Also, there is a much cheaper therapy called Bal-A-Vis-X. We are going to start it this summer. For a few hundred dollars and 1/2 hour per day of mid-brain cross exercises, I think it is worth the attempt. We are 2/3 done with neurofeedback, and have seen some amazing results, as well as some frustrating non-results. Older girl stopped fecal incontinence the minute the neuro addressed her mid-brain region, but still can't remember her colors. The other daughter dramatically increased and then reduced her aggression issues when they worked on her front and back areas (the increase was scary, before the decrease finally kicked in!). But she is still very impulsive. We still have the cross-brain interactions (called "coherence" and "lag") to work on, and I have my fingers crossed that this will really get us to a level of "low normal." Plus, it takes about 6 months for the brain to "use" the new tools that have been created, so improvements can take awhile to manifest. I will let you know of our final results. But, damaged brains are not static and physical structure can be changed, especially in redirection of neurons. Research how pianists "grow" the actual size of their hippocampus, the mid-brain. I would see if you can get a physical image of his brain since an expert suspects TBI (medical insurance should cover it), and then research ways to address the area that shows up. Hang in there!
Sherry

Olesya, The Sculptor

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