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.



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