Add Insult to Injury

Poor Kenny, man, that kid can't catch a break right now to save his life.  How he manages to maintain a positive attitude is beyond me, and I respect him even more for it.

Today was not an easy day for him.  This morning we were working on their project notebooks, and I was giving them new vocabulary words and definitions.  I'd spell words that were hard for them, and Kenny simply couldn't catch it no matter how slow I went.  He eventually dissolved into tears after fighting them back.  I finally had to spell them a single letter at a time, and even then he had a hard time with certain letters.  Suddenly he is hearing "K" as "G", and I have no clue why.  He told me "Mommy, I don't know what's wrong.  I hear you spelling the words and I catch the first couple of letters then it all sounds jumbled up and I can't figure it out."  Even as he quietly says the word to himself, he get it completely, utterly wrong.  For example, he was trying to write the word "Temperature"...a tough one, I'll give you that with that "ture" at the end not being spelled at all like it sounds.  You know how he spelled it? "Tershr".  Seriously.  He is NOT that bad of a speller.  Yes, he spells things incorrectly often, but it usually makes sense phonetically.  This was repeated over and over today, words were spelled in such odd ways that they didn't even make sense.

As we all sat around the table, and I could tell that even the other kids were feeling really bad for him, so I decided to call out the elephant in the room.  I had everyone stop for a family talk.  I asked the kids if they understood what was going on for Kenny lately, and we talked openly about his struggles.  I asked them if they minded if we took more time in spelling things and helping Kenny get things correct, or if they were annoyed.  Thank goodness Kenny has the supportive siblings he has, as all of them loudly proclaimed that they didn't mind however long it took, and they felt badly that it was all so hard for him.  Matt said "Don't worry Kenny, you've seen mom correct my periods and run on sentences all the time!  None of us are perfect." and Angela giggled as she said "Look how bad MY spelling is sometimes too!  We all make mistakes."  As Kenny's tears dried I tried to explain how Kenny heard things, and why sometimes what he does seems so out of kilter with what they know I asked him to do, and mostly I made it clear that it wasn't at all his fault and that we were trying hard to figure out a solution for him.  I told Kenny to look around the table.  "Is anyone laughing at you, Kenny?  Does anyone here think you are stupid?" he started crying again, this time from relief as he said "I am SO GLAD I am not at school.  By now in 6th grade everyone would think I was dumb if I did this stuff.  At least here I know my family knows I am smart sometimes, even if I can't spell or get things right all the time.  I just hate when this happens though, I want to be like everyone else and I don't know how!!" and he laid his head on the table and sobbed as his brothers and sisters looked on helplessly, trying to offer encouragement as they could.

I am mad now, and I fired off an email to our school program telling them we need support NOW, and I don't understand the delays for his auditory processing full assessment.  It is clearly obvious from my own research that this is part of the problem, and there ARE remedies we might be able to find with the help of qualified specialists.  The full testing costs a significant amount of money, and the heel dragging is probably because of that.  We had the preliminary testing at the end of the school year the year we removed him from public school but that was only an indicator, not the full assessment. Even that was a stunning surprise to the staff, despite the fact I had been saying there were issues for over a year that were not just language learning issues.  Just from recently answering the determining questionnaire recently it was clear from the kinds of questions being asked that Kenny is likely to be positively identified with this disorder.  Kenny needs help, and he needs it now...not 6 months from now or 2 years from now.  I know it is likely there are other factors at play here as well, but this one is clearly needing to be ruled out or identified, and then maybe I can get some assistance for him.

Then, to top it off, tonight at TaeKwonDo he learned he will not be allowed to take the belt advancement test as they don't feel he is ready.  I am fine with that, and so is he I think, as we all realize he is not quite where he should be to actually earn the next rank.  But I just keeping thinking that this poor child needs to find success somewhere, and I have no idea where to turn to find that for him.  No matter how hard he tries, it is never good enough...not good enough to play much in volleyball, not good enough to take the belt rank test, his music class on violin is stunningly bad (not surprisingly, he can't hear if he is in tune nor does he have any rhythm), he can't even successfully wash a wall right now.  I have tried everything I can think of and will continue to do so to find some place where he can achieve and feel good about himself, but we are limited in opportunities around here and I just don't know what else to do.  But I am beginning to feel it is imperative that he find success soon at something.

I have appreciated the comments and suggestions that you all have offered, and wanted to share a little with you.  Some have suggested that we try medication for ADD/ADHD such as ritalin, etc.  It is hard when reading the descriptions of his issues, as many sound attention oriented.  We are not against the idea at all, however every professional that has worked with him and every teacher friend we have that knows our kids well almost laughs over the idea of Kenny being classified as ADD/ADHD...it is that obvious when around him in person that he has issues, but that is not one of them.  Most can see it is a brain processing disorder of some sort unrelated to ADD/ADHD. 

Is it diet?  I suppose it could be, but these times when things get worse we see no discernible difference in his diet, as I have thought...especially with his background of malnutrition...that could be a cause. 

Things we are currently considering aside from the Central Auditory Processing Disorder are lead poisoning, as it has been confirmed to us that might be a strong possibility based upon his environment while in infancy and toddlerhood (anyone out there with info on that reading this, please email).  Of course, kids with cleft lip and palate are also at a higher risk for other abnormalities and learning disabilities as well.  Then there is the lack of knowledge about Fetal Alcohol Exposure which is always possible, yet everything I have researched contrasted with the bright Kenny we know seems to point away from that. 

Someone made a comment tonight about making sure we are actively using both sides of Kenny's brain, which is the one thing I have found to be enormously helpful and where I see we are making great strides with Kenny in terms of retention, etc.  This was one of the reasons we decided to homeschool in the first place, because as he was entering 5th grade and moving into higher grades after that we knew there would be far less hands on learning than he needed, and no one would be catering to his need to take information in via numerous ways that were more visual. 

As for special education teachers...that has been a total flop for us as we have found that most want to blame language learning or low IQ and call it "good", basically telling us we should settle and be happy he is functioning at all.  Because we are homeschooling under a public school alternative program, we have access to all the same services we had when enrolled in public school.  However, there is a distinct lack of willingness to dig into the problems, despite my precise descriptions of what is going on.  As you all know, we are fortunate to have several retired teachers who interact with the kids often, and every single one of them does not believe Kenny's IQ score is accurate...and they are not saying that to pacify me.  Kenny is quite articulate, able to conceptualize things on a very deep level, and can tie things together in ways that make it pretty obvious that his IQ scores do not match his true intellect.  Of course, if a child has severe auditory processing issues and memory issues, what do you think their IQ score will look like?  In the tank, for sure. 

I have combed the internet looking for specialists working with post-institutionalized kids regarding academics but all I find are the ones that deal mostly with behavioral challenges. 

If anyone out there has any suggestions at all, please, please throw them out for consideration.  I feel as if we are sinking here, and as if we are literally fighting for Kenny's life.  Does that sound melodramatic?  Maybe...but how long can a child be kicked when he is already down?  How much can his self-esteem take?  We are fortunate that Kenny is a generally positive kid, but I worry that eventually this is going to take it's toll.  As he sat at the table today hitting his head with his fists saying "Why won't my brain work right?" I wanted nothing more than to split my own skull open and exchange brains with him.  Would that it were that easy.

People have no clue what institutionalization, malnutrition, lack of stimulation, and every other aspect of orphanage life can do to a child's brain and soul.  You can not begin to understand the devastation caused until you live with the results of it.  An orphan has already lost enough when they are relinquished, why do they have to lose the ability to think, reason, love and tolerate touch as well?

The good things?  Kenny IS intelligent, he is tender and loving, he is a naturally upbeat little guy.  He is deeply loved and not a quitter.  He is precious.  Somehow, we will figure this out, but we need a little miracle here, for sure.