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.


Joyce said...

My first thought is how validating for you who have been so frustrated and now with good reason. My second thought is that hopefully now you will get a plan on how to help him in the future and where you can expect to see development. And my third thought is how tired you must be to sit thru this all and then go home to 5 beautiful kids and keep going with your brain probably in overdrive.
My last thought is Im so glad for you that you are homeschooling - for all of you but particular Kenny. Gives me encouragement

Love Joyce

Kelly Raftery said...

Hugs, dearest. The good news is that you are coming closer to KNOWING what it is and being able to find more effective ways to work with (or around) it. Think of all the years that you had no idea what the issues were and you were experimenting trying to figure out how to help Kenny. At least with Sandy by your side, you have a chance at making progress.

Kenny (and all your kids) is such a fortunate young man to have you in his life. We have had this talk many a time, but you truly have no idea how lucky he is to have found your family in so many ways. And never doubt that his life will be all that it can be here in ways it never could have been there.


Laura said...

I don't know that I agree with the TBI comparison.... keep working with strengths, which he has a lot of. Focus on what he can do(which you are) instead of what he can't! You are an amazing teacher-mom!

Schlef Family said...

Sounds like you're doing a great job of teaching the kids! It is wonderful to hear Kenny will get the help he needs to learn and you will have access to the resources you need to continue teaching him.

Anonymous said...

God Bless you for not giving up!
Teresa F.

Anonymous said...

We live thousands of miles apart, but I wanted to send you a hug.

Carrie DeLille said...

Oh Cindy, I know the news was shocking, but I must disagree with Miss Sandy "most likely would have been gifted". He is gifted, there is no doubt. Just not in the way some consider gifted. College is not the "all in all". It can't be, for I have many who would never make it there, but they will indeed be successful wherever they end up as will Kenny. As a matter of fact, one CAN be a preacher/evangelist without a formal education :o) "But God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong;" 1 Cor. 1:27. Love you, friend

Michele said...

I well be praying for you guys. We are also doing testing on our son that we brought home almost 2 years ago. He has went from me home schooling him to the big school this year & with a week left in school he has lost all that I showed him how to do. He can't even say his ABC's anymore. We know he is very good at not doing things if he does not want to, but we think there is more wrong. We don't find out tell next week how he did. I well keep praying that you get good news from the next tests, & that there are answers to help us let God work his will in our boys. God has all the answers we just need to listen.