Tuesday, May 28, 2013

Rose Gardens

The Great Awkwardness was the theme of my sermon on Sunday, and while I didn't speak to the parallels in our family, as I sat down to write this evening, it was what kept entering my mind.  We have spent the past 13+ years living in some state of awkwardness, be it waiting on adoptions to be finalized, allowing God, love and time to perform magic and help strangers become emotionally connected, or working and waiting for results as we hit the books hard with homeschooling and hope for tiny miracles to reveal themselves each day.

Awkwardness...waiting...patience...while they will never become my friends, they have surely become my life companions.  And you know what? I have grown in ways I never expected because of it.  Now, don't let me fool you, as my mom would attest to my lifelong impatience with many things, and clearly I will always have room for improvement in that regard, but I am finally at a place where I can talk myself through situations,  I have witnessed what can happen when things aren't forced to try and mature before their time.  I could do "pregnant" very well now, I think.

I will admit that the past couple of weeks were harder than I would have predicted.  I can see where some emotions were allowed to build for too long, and how they spilled over.  What has not helped me in this regard is not having a true homeschool mom kind of friend with whom I can talk over my day to day grind.  Most people have some sort of work related peer group, which I am lacking, and that doesn't help me work things out.  On the other hand, it might be a positive thing as well as then I am left to figure it out myself rather than be led by other's experiences...none of which ever really mirrors mine.

Living in the Great Awkwardness happens somewhere along the line for everyone.  It may be that span of time between jobs, between friendships, between loves.  I realized as I thought about it today, that my Great Awkwardness is going to be years and years long, and will require a new level of patience.  I won't have answers about ultimate results with Kenny, or even any of the other kids, until way down the road.  I will have to use this time to be as creative as I can be, as intentional as I can be, and as trusting as I can be and let God do the rest.

Not a bad place to be, if only I can succeed at letting myself be comfortable in it.  That'll take a lot of work!

This weekend was a relaxed one spent largely at home.  From my previous post you saw a little of our work.  Memorial Day was sweet though, restful and spent together.  We went on a picnic to see the north side of the Black Canyon and take a short hike.

Of course, lunch came first.  Always.  

Then we wandered a bit along a trail that had no real view of what would eventually come before us.

Taa Daa!!!

It was a stunning view.

My Motley Crew

We took a long drive home, and saw some territory that we've never covered before.  Around here, there is SO much to see that we just have yet to get to all of it.  Because we bought an annual state park pass on our field trip, we decided to make a point of using it as much as we can for the year to feel justified in spending the money.  I think that with our trip and this day trip, we are already close to breaking even!  We geocached a little, which we enjoy and are going to try and do more of this summer as well.

We spent the early evening at a local cemetery with our friend, Mr. Steve, assisting the veterans group as they pulled flags from the grave sites.  It was a perfect and solemn way to end the holiday weekend, as the dappled sunlight and the cool evening breeze caught us.  We walked and read the headstones, recognizing so many familiar names from early settlers in Montrose whose descendants are neighbors and friends.  We talked in hushed tones, and we then headed home to lazily spend the remainder of the evening...which always feels like the first "real" weekend of summer.

On the drive home, I had thought that the weekend was a little lacking in excitement and adventure for the kids, and I apologized for not having anything special in particular planned.  It was then that I was reminded how often our own perceptions are so way off base.  Every one of the kids asked why I had said that, and told me that they had a wonderful weekend!  Conversation turned to what makes them happy, and how little they really need to enjoy themselves.  Angela mentioned that working hard makes you enjoy the relaxing times more.  

I have it sooooooo easy in so many ways, and I think I needed to be reminded of that this weekend.  Our kids are appreciative of every single little thing we do.  I get thanked every night for making dinner.  I get hugged often and deeply.  I never, ever beg for school work to be completed.  I usually ask once for a chore to be done, and it is done.  OK, with Kenny I have to ask five times for him to hear it right, but the desire is there! Hahaha!  I have a sweet and tender 13 year old son in Matthew, who just this moment scrambled back out of bed after almost falling deeply asleep...just so he could come give me a hug good night because, "I almost forgot to wish you good night, Mom!"

This past week or so I think I needed to vent how hard it is sometimes.  Being real, being honest and not pretending it is all a rose garden is important to maintaining sanity.  I think it also helps others to know they are not alone in feeling like they want to scream once in awhile, or that they are so deeply sad for their kids sometimes for issues that they face together as a family that were not created by anything any of them had anything to do with.  I hit a boiling point over the past couple of months, I think, and admitting that is something I am not at all ashamed of.  We all get there, and it is justified, and actually quite necessary.  

Every rose garden has a few thorns.  We all get pricked once in a while and bleed.  My rose garden is filled with such beauty, and it is my pleasure to prune here and there as needed, even if I get injured in the process. But that doesn't mean it comes without some pain.  

I think I'm on the other side now, we'll keep on keepin' on as best we can.  We'll live as wholly into our own Great Awkwardness as is possible.  Someday I am sure I'll look back over these years and wonder why I thought they were so hard.  I'll laugh as the Awkwardness will have passed, and the future will have revealed itself to be far less worrisome than I imagined.  I will also see how I grew through the process, right along with the kids.  I'll be stronger, wiser, and tougher.  I don't think I could be more loved, or love more.  Oh wait, yea, that only continues to grow as well :-)  My rose garden might not be one many would select, but they just don't know what they'd be missing once all is in bloom!

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.  

Friday, May 17, 2013

Broken Brains

I don't even know if I can write this post tonight, but I think I'll be unable to sleep unless I lay this down somewhere.  Forgive me if it is less coherent than it otherwise might be, but this is my "working it out" place, so that's what I need to do.

A week shy of six years ago, we were anxiously waiting in an orphanage in Bishkek, Kyrgyzstan, for our new son to meet us.  His grin lit up the room as he timidly walked in, a small plastic bag in hand with all his earthly belongings.  Kenny was all we had dreamed of with his gentle spirit, inquisitive nature, and tiny little body that could ingest more watermelon than any human being ever ought to be able to handle.

For six years we have searched for answers as we fought for Kenny to regain so much of what is lost by any child who has been institutionalized.  Countless school meetings, hospital visits, therapies, and thousands of hours of research and advocating led us to the discoveries we made this afternoon.

Someone finally heard our pleas, someone was finally as frustrated and puzzled as we have been all these years.  Kenny's super amazing speech therapist flat out insisted that this child who was listed as special needs only for a minor speech impediment get tested for numerous issues so that she could effectively work with him next year.  What we have uncovered over the past two weeks or so has been incredibly validating, and deeply sad.  Coming to grips with just how handicapped your child is can be very hard on the heart.  What makes it harder is when your hard work has paid off and now works against you, as the progress made in some areas manages to mask the deficits in others.  With wise experts, however, the truth can eventually be revealed, as it was this morning.

Thanks to the insistence of his speech therapist, Kenny's IEP review that happens every three years was moved up, and that required an entire battery of testing that she also requested that was outside the norm.  During the past three weeks Kenny has been evaluated by an audiologist, a psychologist, and a speech and language therapist, as I have gathered other documentation from his doctor, his online reading therapy, his school records and writing samples I have at home, and much more.

If it weren't so sad, it would be almost comical how many people are now saying, "Oh yes, I see serious problems here."

Today's testing with Miss Sandy, our speech therapist, was to be for an hour and a half. Four hours later we finally left the office, both of us mentally exhausted from all we had learned.  Kenny's speech therapist is a specialist with a unique skill set, as she has over 40 years of experience as a speech and language pathologist who also specializes in auditory processing disorder...and has it herself.  She has worked with stroke victims, and those recovering from brain injuries of all sorts, as well as children with speech and language disorders all across the scale, and she is considered to be "the" specialist for hard core cases on the entire Western Slope of Colorado. God knew who Kenny needed, and it was absolutely Miss Sandy.

Today, after testing, she looked at me and said in her sweet southern drawl, "I know we have no history, but what we are seeing is absolutely NOT just orphanage developmental delays.  I have seen this sort of thing far too often in my career, and I'd stake my reputation on it...your son almost certainly had some sort of Traumatic Brain Injury (TBI).  His test results are identical to what I see consistently in hundreds of patients with TBI."

She added, "This is so sad to me, as there are other indications that Kenny most likely would have been gifted, if it weren't for his broken brain.  I am not just saying that to make you feel better, there is no way a child with these sorts of scores could function as well as he functions unless he started with a really good brain.  He has learned coping strategies that are well beyond the norm for his situation, and he talks his way through when he gets so stuck.  But something went really wrong somewhere along the line.  I am pretty certain it isn't Fetal Alcohol Syndrome because he is functioning way too well for that."

Testing today was pointed, narrowly focused, and stunned me despite all that I already knew and could have told them about where his gaps are.  We found some that I had no clue existed, nor did Miss Sandy expect. You know you have a profound challenge when your testing specialist writes comments like, "This is so painful to watch.", "Can not perform a single portion of this test.", and "I have never seen this before."

Kenny took more than double the lowest average time to do something as simple as name 36 shapes and colors, and he made several mistakes.  On a test with malapropisms, his performance was stunningly poor. While these are not the ones he had, here are examples very similar to what Kenny worked with:

  • Rainy weather can be hard on the sciences. (sinuses)
  • Alice said she couldn't eat crabs or any other crushed Asians. (crustaceans)
  • You could have knocked me over with a fender. (feather)
  • A rolling stone gathers no moths. (moss)
  • Good punctuation means not to be late. (punctuality)

Out of 30, Kenny completely missed 16.  He absolutely thought they were correct, and did not catch the mistakes at all even when repeated slowly and clearly 4 or 5 times.  He didn't hear it right, he mistook words like "buzzard" for "blizzard", and many more.  

Another test had Kenny trying to repeat back numbers or sentences.  He couldn't repeat back more than 3 numbers without starting to make mistakes, and sentences that were about 6-7 words were his max without him making changes to them.  There was one test that is very difficult to explain here, but was words separated and out of order on a page, and he was to form two different sentences with them while using all of them.  This task was the sort that a normal brain could look at and rip off within less than 10 seconds.  Kenny couldn't manage to do a single one correctly even though given more than aple time and plenty of hints, not even the most simple sentences were ones he could "see".  He further showed how difficult things are for him (and us!) when Miss Sandy then said the sentence correctly, and asked him to write it, and he wrote it wrong, adding in a word.  When it was pointed out, he was asked to rewrite the sentence correctly, and he rewrote it exactly the same...3 more times...even after having it pointed out where he was continuing to make the mistake.

She looked over at me, and said, "How do you do this every day without wanting to give up?  How have you managed this, and still had the results you have had in so many areas?"

Later, as we had finished testing and she was totalling up scores, she showed me that Kenny is low average in several categories, and even high in a couple like vocabulary comprehension, which makes his overall scores just a tad over the true special needs mark for certain language deficits.  BUT, she said he scored SO low on three areas that it was stunningly bad, it had just been masked by his above average scores in other areas.  In two areas, he scored a "2" out of a possible score of 10.  She said, "His non-verbal intelligence is completely faking people out, this child has a really severe problem, especially when combined with all the other areas he has tested in this past two weeks that I already know are showing disabilities."

So we talked about his future, about realistic expectations, and about what steps might be taken.  I have such great respect for her because she tells the truth, she doesn't try to sugar coat it.  She said we are entirely right to be concerned about the possibility that he might find it difficult to one day live on his own, because the areas he has such problems with are the areas that might make it hard for him to hold even a job at McDonald's if he is not working with someone who understands him, has patience with him, and allows him the sort of months long (if not years long) practice he may need to do a job well and not miss steps.  She explained that there are areas we can work on and will lead to some level of improvement, and there are some areas we will likely be wasting our time trying to improve his function and we might be wise to look at compensatory strategies for those areas.  She said he actually might be able to do well in college, because he CAN learn if material is presented to him in the right way, but it would take someone coaching him through every step and basically re-teaching material in ways that he can "velcro" it to his brain.

And then she said, "But...the truth is...his state testing scores should never, ever look like they do.  Somehow, you have already figured out many ways of teaching him he can succeed. If I saw him on paper with just his special ed test scores, I would say he would never even hit a passing score on his state tests, that it would be expecting too much.  Yet here Kenny is, testing high proficient in some areas, advanced in math, and yet can't remember the months of the year no matter how we try to teach them to him.  So, we have six years to see how much we can improve those areas that can be improved, and who knows who we will have standing in front of us at his graduation one day."

We have the actual IEP meeting next Friday, where all the results from all the testing are presented, and  supposedly a game plan for remediation or compensation will be presented.  We have hard data to present now, and that should keep the insulting "How could you possibly know that" sort of comments to a minimum, and might lead us to real help.

Miss Sandy put perfectly into words what makes this so hard for us, as his family, when she said, "Kenny is an enigma.  He is incredibly bright, he knows so much, and yet the simplest tasks cause his brain to literally shut down.  In some ways, it would be much easier on you if he were all around low functioning, because you could move to acceptance.  But you can't, he has too much going for him and we still have several years to work with it.  We might make a lot of progress, but it is never going to be steady and will always be up and down.  But he is showing you every day how smart he is, and how much he can learn because he is willing to work so hard.  We just have to not give up on him."

Of course we won't, not ever.  But on nights like these, I am particularly wiped out by it all, and feeling like I just want to give up.  It is harder than I can explain to anyone to parent and teach and coach and correct all day long.  I explain, I re-explain, I remind, I check, I bang my head, and I do it all over again.  As Dominick is always reminded when we are together 24/7 for a bit, it never shuts off.  I can't let down on the prompting, correcting, encouraging, and learning, because if I do, we lose ground almost overnight.  Simply wracking my brain during any given lesson about how to present something visually so Kenny can "see" it and remember it is hard work.

I know its worth it, I love that kid so much!  But I am tired of thinking, I am tired of how hard, sad and discouraging it is.  I am tired of no feedback, no workroom to go blow off steam with other adults over it on particularly bad days, and I am heartsick seeing him try hard day after day, only to find he still can not do certain simple tasks.

I don't want to have a son compared with having  a Traumatic Brain Injury.  I don't want another son whose intelligence is questioned because he can't write a stinking two sentence response in a greeting card so that it makes any sense.  I don't want a son or daughters who are locked in their own traumatic pasts that continue to haunt them when they least expect it.

But I want THESE kids, oh how I want and need them!  Tonight I must remind myself that they are not their challenges, they are their strengths.  They are the hard working, faithful and loving, math whizzes and history buffs who WILL make it in the world, no matter what, because they are deeply loved and fully accepted.

It will be my mantra.  I can do this.  We can do this.  All is well.  Hard never killed anyone.

Maybe tomorrow...tonight, I think I just need to feel very, very sad and very, very tired.

Thursday, May 16, 2013

Head Above Water. Barely.

I know some of these special ed type posts are boring, but there are parents who read the blog whose kids are struggling with challenges they can't find answers to, so I try to share as much information as I can in case someone says, "Ah HAH!  That sounds familiar!"  So many times through the years I have learned more from reading a blog than from any expert, so I try to give details that might help some other parent piece together the clues about their own child.  So read on if you are interested, or return in a couple of days when I'll have posted about something else.

Returning from a 3 week adventure with 7 people means a lot of work, almost as much work as preparing to take the trip!  Laundry for 7, no food in the fridge, paperwork to catch up on, you name it.

That was the easy part.

The more challenging items on my "To Do" list made that seem easy.  The past two weeks have been spent in meeting after meeting with school, for both our Charter School process, and special education meetings for Kenny and Matthew.  I heaved a huge sigh of relief as I put my signature on the last document for Matthew's 504 plan, which gives him legal protections from now on for Dysgraphia, both in college and in the workplace someday.  I was given a result which explains a lot about his inability to write well. When he was evaluated they gave Matthew a test for Visual-Motor Integration which is exactly what it sounds like, how well his visual and motor skills integrate and allow him to function in areas requiring that combination.  What was his score?

12th percentile. "...indicates a vast weakness, especially in relation to what appears to be a well above average non-verbal cognitive ability."

Guess that explains it.  His test results were really odd, which I was told was not unusual in a young person like Matt, who is classified as "twice exceptional".  Scores were all over the map.  He is classified, for the testing as 8.5 grade level.  His lowest scores ranged from 2.5 - 12.0 grade level on his writing samples, with an average of 5.6 grade level.  Spelling in isolation, weirdly, was a 12.9 grade level and of just sounds he maxed out the test.  That is the very difficult part about Dysgraphia for some kids, and if any of you reading this have kids who can spell well with individual words but can't seem to spell a lick when embedded in writing...that is a big clue.  In broad written language skills and written expression, he scored out of high school level with a 13.3 grade level...but his writing is at times incomprehensible because words are jumbled up, syntax is a mess, and he absolutely cannot edit his work, no matter how hard he tries.

No wonder he has been so frustrated.  Conceptually, he gets it and has beautiful ideas and very mature, expressive language...that he cannot use in written form well at all.  It has explained so much to us, and probably the more important piece about all of this is that now we have appropriate expectations for Matthew's school work.  No longer do we jump to conclusions that he is being sloppy or lazy, or rushing too fast through something.  We know he has a clear disability, and we are now more able to work with it.  I now look for textbooks and workbooks that will not require as much writing or essay question type answers,  but have more multiple choice work, or we do verbal responses to essay questions to verify comprehension of content.

Matthew feels a huge sense of relief, and he doesn't see himself as "stupid" anymore.

Then, there is Kenny, who has had numerous tests over the past two weeks, much to our delight!  Finally, we have been heard and finally, someone in the system is on our side and validating everything we have been saying for 3+ years.  I remember working with Kenny on his reading and homework while in Kazakhstan adopting the girls, and having this growing knot in the pit of my stomach as it became ever more obvious that despite what we were being told at school, Kenny had some very serious learning challenges that were completely unrelated to English Language Learning.  So often, everything is understandably blamed on language acquisition with older adopted kids, which is logical I guess, but their backgrounds are ignored.  Laying in bed over there after one particularly worrisome evening of school work, Dominick and I whispered quietly about how very worried we were over Kenny, and wondering what in the world was wrong with his brain.  We knew it was not just learning English, but we were flying blind trying to figure out what was going on.

Fast forward 3 1/2 years, hundreds of hours of research, hundreds more hours working with him one on one, and the testing going on right now is supporting all that we suspected and then some.  Kenny has ADD, which is the least of our worries, but he also has verifiable auditory processing disorder with his left ear in particular dramatically affected.  According to tests last week, Kenny's brain only process about 5 5percent of what is coming in his left ear.  He can hear it, but those sounds are garbled and  not able to cross over to the right side of the brain and the language center to be worked with.  He literally only grasps about 55% of what is being said to him in that left ear, and the right ear also is at a considerable deficit, but nearly as badly as his left ear.  He also had a test that for the first time reflects a hearing loss in both ears at about the tonal range of my voice.  I don't have a particularly high pitched or low pitched woman's voice, I am right in the middle, and in that middle range, Kenny does show hearing loss.

The audiologist...the one who was so awful to me last year on the phone, was the one performing the tests.  She was quite uncomfortable initially, but warmed up as the testing went on.  She found other dysfunctional areas as well, as Kenny tried to repeat words she said, and missed sounds often...sometimes repeating things wrong 50% of the time on the list she read out loud, when it was multi-syllable words.

She turned to me and said, somewhat apologetically, "I reviewed all of Kenny's state testing scores and other documentation, and for the level of disability he has that I am seeing here, you have done what would almost be impossible.  I am sorry that our department didn't take you more seriously.  Your son has a significant amount of processing dysfunction, and I don't know how you as an untrained professional were able to get him to read or even speak as well as he speaks with this sort of severe auditory disorder."  I was told they would have some ideas to discuss for working with Kenny when we have the IEP meeting next Friday, but hearing aids and other assistive technology is being researched.  When we had other testing with his amazing speech therapist, whom we have 2 more hours of testing with tomorrow, Kenny was only able to repeat back to her the most basic sentences correctly.  When sentences with 8+ words or more complex structure were presented, he totally bombed.  In other words, he can repeat back "Dick and Jane" style sentences, but anything much more complex, and he simply cannot take it in and spit it back out.

Next Friday we will gather with 7 members of his "team", and see what they come up with. As his speech therapist said, "I refused to work with this child any longer until they provided me with the information I needed to be effective.  I get this young man walking in my office who has an IEP for a minor speech defect, and I can tell immediately he is absolutely not just a speech kiddo, and I can't understand for the life of me how he fell through the cracks when it is so obvious he has major problems. This is what I hate the system, it just doesn't work for kids like Kenny.  I am going to insist that his IEP state all of the issues he has, and too bad, they'll just have to figure out a way to start working with it."  She was livid to learn they had denied him earlier because of IQ and non-native born status.  It is only due to her help that we have made headway this year, and might get Kenny properly "labelled".

I know many parents don't want a label attached to their children, but when you have a child like Kenny, or even Matt, getting those proper labels is imperative to be able to access the services and protections they need, both now and in the future.  Kenny is still a kid for whom it is totally up in the air whether he will be able to live 100% independently as an adult.  He is very high functioning, and will be on the edge, but we can see if we don't make continued improvement that he is most definitely at risk for needing ongoing assistance as an adult, and his speech therapist agrees fully with that.  She said that what happens in the next few years are so critical for Kenny, as it may mean the difference between independence or assistance.  There are post-high school programs in our area that carry until someone is 25 years old to help with job training, life skills assistance, on the job mentors, etc. but we can only get that help for Kenny someday if he qualifies based on us pushing for proper "labelling" today. We want Kenny to have every opportunity, just like we do all the kids, to be able to succeed. For Kenny, success means proper, effective interventions to maximize the potential he has, and access to programs and services now and in the future that may lift him into self-sufficiency. People who are around Kenny don't always see the degree to which he is hindered, but if you live with him for a few days it is very clear.  He has every chance for success though, as he is industrious, compliant, helpful, courteous, and despite his issues, he is a very bright kid.

For the first time, Kenny will be attending his own IEP meeting next week, and he told me, :"Mom, can we just tell them right from the beginning to not be over sensitive because I am in the room?  I mean, remember when Mr.---sent me out of the room because he didn't want me to hear bad things?  Well, do we have to play that game?  Can't we just tell everyone on Friday first thing that I already know my brain is sort of scrambled and that way they don't have to pretend in front of me and can just be honest?"  That's our Kenny, boldly going where no other "scrambled brain" kid has gone before :-)  This will be good to teach him self-advocacy skills, and it should prove interesting with the other adults in the room.

But Friday next week will be it for a short break, no more school meetings for about a month, no advocating, no therapies, no testing. After about 12 meetings in 15 working days, I am plum worn out and will be looking forward to the break.

Wednesday, May 08, 2013

Westward Expansion - The End of the Trail

Well, let's see here, I left y'all hanging, didn't ?  So sorry about that!  We arrived home late Thursday evening, and it seems like real life barrelled down on us immediately.  After being gone so long, I guess it is to be expected, but it would have been nice to decompress a little!  You can imagine the laundry that was piled up for three days on the living room floor, I won't show a photo of that one :-)

But let's step back a few days to the last couple of adventures of our Westward Expansion trip!

We left Yellowstone, and all were sad to say good-bye.  It was such a beautiful place, and we agreed we need to return to see the other half of the park that was closed and not yet open for summer visitors.  There was far too much to explore than 2 days could allow, and we spent a little time on our drive to Idaho calculating how many hours it was from home if we were to drive back someday.

Montpelier, Idaho, was our next destination.  Why, you might ask?  Well, we asked the same thing as we pulled into town!  Hahaha!  Oh my goodness, it had the feel of a near ghost town, with many abandoned buildings and empty store fronts.  Weedy lots in front of long closed motels lined the main drag, and I wondered what in the world I had gotten us into.  I almost expected to see Stephen King cross the street!  We teased and joked as the wind howled around ol' Jorge, and we realized we needed at least one One Horse Town to visit on our trip!  We were staying in a Super 8, which was actually quite nice, but it initially felt like we were the sole occupants of this largish hotel.  We later learned that the town was indeed about half the size it used to be before the long, slow decline of the past five years or so, but the train companies were working tracks nearby and eventually the motel filled up for the evening with rugged, tired, strong men who had put in a hard day's work and had another to wake up to in just a few hours.

Why were we in Montpelier?  I never answered the question sufficiently...we were there to visit the Oregon Trail Museum.  I would never have built this into our trip were it nor for having it suggested several times on a homeschooling forum I participate in.  Reading about how great it was, I figured we just had to see it.  As we drove past it, and realized it was right next to our hotel, we wondered if it was going to be worth the drive.  It didn't look all that impressive from the outside, but we were there and the hotel was booked, so we figured we had nothing to lose.  After an evening of card playing, where Dominick taught the kids how to play "Hearts", we rose the next morning and lazily made our way across the street to the museum.

When we entered the building, we were greeted by a couple of nice ladies in the gift shop, where we were told that the museum was closed and wouldn't be opening for several more days.  She invited us to view their art gallery of western art with hidden pictures in each canvas, and she visited a little more with us.  

When we explained what we were doing there, and what we had been studying, she hesitated for a moment then said,"If you are willing to pay the regular fee, I can call the Wagon Master and see if he has time to come down, open it up, and give you a demonstration."  I hadn't realized this was an experiential sort of living history museum.  When we told her we would gladly do so, but didn't want to put anyone out, she said it wouldn't hurt to try, and off she went to place a call.  Meanwhile, another couple had come in hoping to see the museum as well, and all of us were so happy when she said that if we were willing to wait a few minutes, they would go ahead and let us go through.  As it turned out, we were especially glad that the effort was made, as this was the best museum we visited on our adventure!

In comes our Wagon Master, whose name I have now forgotten, and he is fully in character and ready to take us on our long journey over the Oregon Trail:

This was such a great museum! They walk you through the entire process of pretending to get ready for the journey by buying a wagon and supplies, as they explain about what is needed to make it alive, some of the hardships experienced, and many little things we weren't aware of or hadn't thought about.  Original artifacts were out on display, along with some replicas, that we were encouraged to touch and hold:

Every boy over 12 on the wagon train was required to carry a rifle.  The trip averaged about $800 or more, which on wages of $3 a week took a very long time to raise.  Angela discovered the rifles were quite heavy back in the day!

The museum is built right over the top of the actual Oregon Trail, and artifacts were found as they dug the foundation.  The dirt right exactly below our feet was where wagons like this left deep ruts:

People often think the pioneers rode on the wagons, but they didn't.  Most often they ended up walking the majority of their time on the trail as their loads were already too heavy for the oxen.  Can you imagine walking over the Rocky Mountains?  Cooking with buffalo poop?  Sleeping under a wagon for 4-5 months? One out of every six pioneers died on the trail.  That means in all likelihood, someone in our family would not have made it to the promised land of Oregon.

To survive the trip, our family would need upwards of 800 lbs of flour, 120 lbs of coffee (Blech!!), about 800 lbs of bacon, and a couple hundred pounds of sugar.  Startling, isn't it??  They'd stock up in stores in Independence, MO or just a little further up north, find an experienced wagon master who most often instructed folks to purchase a brand new wagon in the hopes it would remain intact for the entire trip.  We all decided that instead of going to Oregon, we would have tried to capitalize on the situation by opening a shop instead to sell supplies to the pioneers...less risk, and more reward.  Olesya said she did NOT want to spend her days picking up buffalo poop to cook with!

Our wagon master stayed in character throughout, and did  wonderful job of offering loads of information as we walked through the museum.  Next it was into a wagon, rigged up on a platform to feel as if it was really moving, and while we rode there were stories piped in over speakers shared from actual diaries of local families whose relatives were on the Trail.

Having arrived at our nightfall campsite, we were met by one of the pioneer women who shared stories about cooking out of a wagon, and the true story of hitting a bear over the head with a frying pan and killing it!

Olesya loved listening to the pioneer woman!

We learned more about the wagons themselves and the oxen that pulled them:

Above is a Wagon Odometer, seriously.  They used to have children count the revolutions of the wagon wheels so they could more accurately figure out where they were and the mileage covered, but too many were killed by being run over, so a company came up with this gadget.

I had never given it any thought that oxen would need a different style of shoe.  This is for one hoof, and it comes in two parts.

Finally, we were finished with our tour, and had to leave the trail behind

We thoroughly enjoyed our time at the Oregon Trail Museum, and ultimately felt it was well worth traveling out of our way to see.  They did a very good job of bringing the experience to life with the sort of information they shared, and we though it is not a big museum, nor fancy, it was awesome and all of us talked about how much we learned even though we studied so much before hand.

After spending an afternoon geocaching and finding three caches, we holed up for the evening and readied ourselves to head out for our last full day.  We were going to Dinosaur National Monument to see the Dinosaur dig,where fossils were left embedded in the dry earth to allow visitors to see what paleontologists see when they are unearthing dinosaur fossils.  This too was way cooler than we would have expected, and a place we would not have gone out of our way to see if it weren't along our drive home.

A beautiful 2 year old facility houses the dig area to protect it.

Some of the fossils you can see on the large wall of them.  It is upright as it was pushed upward when the earth heaved. This area was originally a river bed.

Matthew and Kenny both thought it was super cool to touch real dinosaur bones left in place.  None of the boys were ever dino kids like many boys are, preferring super heroes (Josh), Kings (Kenny), and Construction Vehicles (Matt) when they were younger...well, Matt anyway.  Josh and Kenny still love those things, but Matthew has moved on :-)

And that, my friends, was the end of our trip.  Nothing more but a long drive home.  Jorge was wonderful on the trip, providing a much safer ride, no bottoming out, more space for the kids, and not a problem in the world engine-wise.  We kept saying over and over again how blessed we were to find such a bargain on Ebay that fit our needs so perfectly.  You would never have guessed it wasn't a brand new van from the kind of ride it offered, certainly not a 25+ year old van!!  God really provided for us with that, and at a price that we could afford.  Though we definitely miss the RV and wish we had it for camping this summer, Jorge made more sense, and was quickly turning into a "need" not a "want", at least for safety's sake.

Jorge, in definite need of a car wash!! Almost 4000 miles later, he earned it!

So it is back to routine, which is a good thing, too.  Angela could have stayed on the road forever :-)  She is such a road trip kid!!  She needs to find a job that involves travel some day.  Everyone else was pretty much ready to get back home, sleep in our own beds, and see our friends who were terribly missed.  This trip proved far more educational than I ever would have imagined.  Things we learned, aside from social studies topics were:

1)  We really do travel well together, and we didn't feel at all like we needed to get away from one another!  That was a nice surprise, and in fact I already miss the somewhat uninterrupted time we shared that was such a gift.

2)  We will attempt from now to on to always book with small mom and pop motels.  The ones we stayed in beat the chains by a mile.  Cleaner rooms, friendlier staff, maybe fewer amenities, but often larger rooms.

3)  We need to ditch the spare tire on the back, and give ourselves more space on the rack.  We will put the spare on the roof next time.

4)   Use the "Yelp" app to find good places to eat.  The few times we ate at real restaurants, we found the less advertised, great "hole in the wall" type places by using Yelp.

5)  Girls and boys in their own rooms works really, really well...no one complaining to the boys to pick up all the time and the girls had our clean, comfy room with no smelly socks and wet towels strewn everywhere.

6)  We were on a very tight budget, and were reminded again that ordering water at every meal instead of a soda saves a fortune.  Well...sometimes mom cheated, but everyone was supportive of that idea :-)

7)  Don't bother with a hotel washer and dryer.  When traveling with 7 and needing to do laundry, just go find a laundromat and do it all at once.  An hour and a half and we had a weeks worth done for all of us.  Oh yea, and bring your own detergent, don't buy it there (we didn't learn that one the hard way, we anticipated it ahead of time)

8)   Using any smart phone made the trip ten times easier.  We had never used it as much for travel as we did for this trip, and it was the single best tool we had for finding out information on the fly, changing reservations and using Trip Advisor, getting maps, looking up attraction hours, etc.

9)  Give the LaJoy's a deck of cards, a game of Rummikub, and a game of Quirkle, and we are set for daaaayyys.

10)  Always, always seek out hotels or motels with elevators.  We haul too much for all of us to go up and down stairs, especially with my bum hip.

What were our favorite things to see?  Surprisingly, many voted for the Budweiser tour!  The sheer volume and statistics as we watched the bottling plant made it an unbelievable place to see.  We all really loved Yellowstone, and the Oregon Trail Museum.  Of course, Mount Rushmore was just awesome to see.  The arch was cool to see, but not a place we'd return to.  Honorable mention for better attraction was the Vaile Manson, which surprised me, but which everyone appreciated.  It seemed like the bigger hits were the places that gave you a real sense of what life was like in a different era, not where you just looked at exhibits under glass. All in all though, our travel agent (Me! Haha!) did a pretty good job by everyone's account, and the only "flop" was really the National Trails Museum in Independence...a total "not worth the drive".  Though thinking about it now, we did enjoy the Truman Presidential Library there, which we wouldn't have seen if we hadn't gone to Independence for the Trails Museum, so maybe it was still worth it!

The trip generated so much conversation, deep thinking, and desire to learn more about newly discovered people and events.  I know we are a total geek family, but I think I like it that way!  We all read a ton of books while we were driving, Matthew practiced his card tricks and grows ever better at dealing and shuffling, Angela followed in Josh's foot steps and bought a much larger teddy bear to sleep with, which melted my heart just a little to watch my big fifteen year old daughter fast asleep in the bed next to me snuggling her bear close to her cheek.  Olesya showed me today some of her really great photos, and we can't wait to work on her slide show.  Kenny is now spouting all kinds of facts recalled from the trip days later, and reminds me of how smart he is and how much he can retain if just presented the material visually and experientially.  Dominick and I?  We're TIRED!! Hahaha!  Tired, happy, and blessed beyond all measure.  I still can't believe we were able to do it, something I had long dreamed of one day doing with my then imaginary family...a long road trip to see the sights of the west.  The only thing we missed was the one thing I really wanted to see, the Laura Ingalls Wilder Museum in DeSmet, SD.  Maybe another road trip someday!

The next couple of weeks are booked solid with testing for Kenny, some of which happened to day and I'll blog about the next couple of days, more school meetings, Matthew finishing up a marathon to get his last two subjects done by Friday for the year, church work, and shoving down the growing panic over moving on to high school homeschooling next year...which is really more like the next couple of weeks for us.

So it's the end of the trail for the trip, but the new trails stretch out before us, waiting for us to saddle up!