Saturday, November 03, 2012

Mental Melt Down Week, or Our Sons and Their Journeys

Wow, this week has been an unusual one, filled with emotion and stress from unexpected directions...all three of our sons have suffered in one way or another, all three have been in tears, all three have had me wishing life had treated them just a little different.

I am digging deeper to learn more about dysgraphia and brain development in general.  As an adoptive parent, there is just so much that is unknown.  We have no idea about prenatal care, alcohol or drug exposure in utero, or good old genetics. The single common factor that any parent of a post-institutionalized child knows for certain is the complete lack of stimulation and neglect that stems from orphanage care.  Note that I am NOT saying that orphanage care is awful, although in some circumstances it certainly is.  I am simply saying that there is an inherent lack of stimulation and interaction that is part and parcel of being institutionalized in early childhood.

We take for granted the sorts of activities that have an incredible impact on brain development...things such as having one on one conversation and eye contact, having a wide variety of interactions with the world around us, hearing language constantly and having physical touch be a part of our every day lives.  Even such things as a trip to the grocery store, being held and read to by mom or dad, or hearing music and swaying to it all have more of an effect than most would ever imagine.

This week Dee over at Crab Chronicles sent me a link to a blog post written by Cindy Bodie which you can read here: . It pointed out something most really, really don't "get"...that neglect changes EVERYTHING.  Oh yea, there are those who cast off the damage done by pointing out over and over again casually "Oh, the brain can rewire itself...eventually it'll all be fixed."

No, sometimes it can't be.

Let me share with you a couple of photos:

Above is a brain scan from two 3 year old children, one who was subjected to extreme neglect as any institutionalized child is, and one who came from a normal situation where the child's needs were met.  That size difference is not because the scan was smaller, it reflects how the brain ceases to grow at a proper rate.  See those dark spots that are far larger on the right than on the left?  

This isn't an anomaly, this is standard and what you would see to some degree in the brain scans of most children who have experienced neglect.

I have no doubt at all that Kenny's brain would look similar.  
What would scans reveal about our other kids? 

Here is another sample scan, this time you can see the areas on the left that are fully developed versus the right one where you can easily see the lack of development.  Again, it is pretty clear that there are some serious problems present in brains of kids like ours.

Yesterday was one of those days where scans like these make so much sense, and sadden me so much.  Kenny couldn't remember the name of the orphanage he spent several years in, he couldn't sound out 4 letter words, his writing made no sense at all it was so jumbled up, and he couldn't say the word "tasks" no matter how hard he tried.  His reading was so, so difficult.  We ARE making progress and it IS better than it used to be, but days like yesterday make me want to put my head on the table and cry.  He turns 14 years old in two weeks, and still he struggles to consistently read 4 and 5 letter words, and he forgets the definitions 5 minutes after I give them to him.  We are working on the Processing Program where I tell him to look at a group of photos and "Point to the jar with a few yellow balls." and he can't do it.  Some days he can, some days it is like his brain has hiccuped. Looking at scans like the ones above though, Kenny has overcome much more than most might realize to even function at the level he functions at.

I have been struggling over things with Matthew, perhaps because I thought that we had one child for whom things might be a little easier.  I have known there was an issue for a long time, but at first thought it was lack of instruction.  As time went on, it was clear it was more than that.  I am grateful for the blog comment that urged me to look more carefully at dysgraphia, for it is almost 100% certain that is what we are dealing with here.  I have spent the past several nights up until 1 or 2 AM researching, trying to find help and what might work for him.

You know what DIDN'T help?  Contacting the Special Ed representative for our homeschool program, sending her samples and explaining that I really, really needed her to give me some feedback and let me know where we go from here.  Her response?  I quote "I learn so much from you. Thanks for including me in everything you do, I pass the info on to others that may need what you have."  Totally not what I needed.  This was my third specific request.  What is the hardest part of having kids with issues is NOT the kids themselves, it is begging and battling the system to advocate for them.  It is frustrating beyond belief.  What do I do with a response like this???

Let me share with you a sample of Matt's spelling tests:

What Matt consistently does on every spelling test with at least 2 or 3 words is what you see above.    He writes them out several ways and selects the one that "looks" correct, based upon the actual shape of the word and where it goes high or low in actual shape.  In other words, he does not sound out a word to tell if it is correct, he uses his gift for spacial relationships to see that it is "shaped" right to know if it is correct or not.

I tried to post a sample of his writing here, but it is too light to view well.  I had him write a 2 paragraph short description of a storm.  In it he had 2 obvious run on sentences,  1 fragment, two capital letters in the middle of words, 3 easy very misspelled words, and more than I can count that were misformed and I was unable to read.  

Because dysgraphia is not easily remediated, from what I understand and what one specialist has shared with me, we are being guided to look immediately at compensatory strategies that will help him right now.  He has already had 3 presentations of grammar/punctuation skills through the last 7 years, and nothing is "sticking".  We are looking at special word processing software that will help Matthew catch his more unique mistakes and misspellings, as well as allow for text to speech and vice versa so it will read what he typed back to him allowing him to hear his mistakes and correct them, and speech to text so that he can dictate words or sentences he wants to use, and it will type them for him.  We have yet to make a decision as the software is pricey and there are a few different programs available, so we'll be evaluating them and making a decision soon.

This has been escalating for awhile for Matthew, and early this week he dissolved into tears over the frustration.  He knows his writing ought to be of much higher quality by this stage in his academic career, and he literally can not see his mistakes to edit his work.  When I sat with him and asked him to explain concepts out of his advanced grammar text, he nailed it with every single answer.  He looked at me and in a pleading voice said "Mom, why do I know this stuff but I can't DO it when I write?  I know grammar, I know what it is supposed to sound like when a good sentence is written, but I just can't write one and it never comes out right on paper."  So I explained to him all that I had learned this past week or so, and was honest with him about the fact that there was not a lot we could do about correcting it, but that there were some options for adaptive technology that might help.  I then showed him the web sites for a couple of software programs: and another one .  We spent about an hour watching videos of how they work, and what they might be able to help him overcome.  He looked at me and said "This is exactly what I need, Mom. I mean, I am not giving up on trying to write things right, but I just can't no matter how hard I try.  I am tired of feeling so stupid when it comes to writing, and it is getting embarrassing now that I am older and should be able to write better.  Can we try this and see if it helps?"  For the first time in a long while, I saw him hopeful about this issue we have struggled valiantly to overcome since 5th grade.  

Today was both Kenny and Josh's meltdown day, for a Double Down.  Kenny was at speech therapy, where she had him working with software on her iPad that had him making up sentences to create a story about a picture on the screen, then he would speak into the iPad's microphone and it  would record his speech so he could play it back and hear his own words.  I could tell by the furrowed brow that there was a problem after he heard the first playback of his speech.  The second sentence he listened to surprised me when I saw a tear fall down his cheek when he lowered his head hoping I hadn't seen it.  In all these years, Kenny has never ever really been disturbed by his speech. Oh, he has wished it was clearer but he has never shown signs of it really bothering him more than it being an annoyance.  

We all sat quietly for a moment, giving him a chance to collect himself, and he whispered "I don't want to do that anymore."  I asked him to look at me and I asked him what was bothering him so much.  He replied, "I hate the way my voice sounds, and I don't want to do this again and have to hear it."  His speech therapist, who is very kind and understanding asked him what it was about his voice that was upsetting him.  Kenny finally looked up and said, "I sound awful, no wonder no one can understand me.  I never realized I was that bad!"

His therapist then asked him to look at her as he wiped still more tears away.  "Kenny, you don't even realize that you are a miracle child, do you?  You were in an orphanage until 8 years old, you have a bilateral cleft lip and palate, you have all kinds of trouble making your brain work the way everyone else's does...and LOOK at you! Look how far you have come!  You are so intelligent,and you have such a great attitude, and most kids dealing with all you have had to deal with would never have made it this far!  You are awesome, and you need to know that.  I know it is hard, and I know how much you and your mom have worked to get you where you are right now.  You need to think about how far you have come, not have far you still have to go."

Kenny looked up at her and laughed just a little.  He said, "Well, I may not be able to hear anything right, but at least I can read some now.  But I don't know if I'll ever speak very well like I want to."  He then asked what was next and they moved on.  Later, in the car on the drive back to Montrose, he was pretty quiet and I wanted to give him a little space.  He eventually turned to me and said, "Mom, I'm sorry I got upset back there.  I was surprised at myself and I'm not sure why it bothered me so much.  If you want me to do that program, I'll go ahead and do it."  I looked at him and told him, "I know why you were upset, Kenny, its because you are as tired of everything being hard as I am for you. You are tired of it seeming like none of  this will ever really improved, you are tired of being different, you are tired of never remembering anything.  For once, you just wish it were easy."

He sat there for a moment then said, "How did you know, Mom? How did you know that I feel that way?"  I told him that I just guessed, because I sure would feel that way if I were in his shoes. He went into a belly laugh as he said, "Mom, you don't even see it, do you?  You ARE in my shoes, just for different reasons!  You are tired of working hard with all of us, and no matter what you do something else stands in your with me, or Matthew, or correcting the girls's English all the time.  You have to be even more tired of it all than we are!!"  And in good ol' Kenny style, he said, "Being a LaJoy is hard work, but at least we're happy.  It would be even harder work if our family was depressed over stuff all the time.  It makes it easier to laugh about it when it gets hard." then he told me he would try and be more positive about his speech and not expect to much when we are working on so many other things.

Melt down #3 was one I had been waiting for, as the time for me to leave draws closer and Josh is still in the middle of his annual Season of Anxiety.  He tried SO hard not to lose it tonight, when we were gathered round the table talking about something that came up that might mean a little change for him in his life. He did all he could to hold it in, but it proved too much and he cracked, the chest heaved, the cries of fear and despair came.  We are at the peak of this bad time for him as I have to leave Sunday for two weeks, and clearly he feels incredibly insecure about it.  He admitted that he felt scared and he came and sat on my lap as he tried to get it under control.  The whole family's heart breaks when Josh is like this, for we know there is little we can do but be there and reassure him the best we can.  Blankie has barely left his side this past month, and tonight he is sleeping next to me, peaceful at last.  One day, October and November will arrive and depart with nary a moment of concern.  Somehow, though, tonight it feels like that day is a long way off.

Melt Down Week is over, I hope, and we will continue to seek out answers for all the questions that remain.  We keep trying, we keep loving, we restore our souls as best we can.  I leave for California early Sunday morning, and will hope that emotional stability will be in place here at home while I am with Mom as she too goes through an emotional couple of weeks with cataract surgery. Like in her case, the end result will be a much brighter view of tomorrow, and I wish that for all our children as well.

Our Three Sons, miracles each.  We could not have asked for more perfect sons, despite how the world might view them.  Matthew, with his quiet, calm assurance and tender ways with his Mom.  Kenny, whose smile lights up any room and whose insights reveal the deep young man trapped inside a faulty "networking" brain.  Joshua, so so sweet, so mature and deeply caring.  

I'll walk through hell and back with you, boys!

Kenny asked me today if we would have gone ahead and adopted him if we had known what the future held and how "screwed up" he would be (his words, not mine).  I couldn't help but grin when I looked over at him and said, "What?  And miss out on YOU?? No way, Jose!!!  I never asked God for a perfect child, I asked God for OUR child and we knew it instantly with you.  You aren't screwed up at all, Kenny, you are just a true LaJoy and we are all a little different than the rest of the world." He laughed out loud of that and added, "Yea, I guess you're right Mom, we are all pretty weird!  Maybe its good I ended up in this family, another family would think I was totally weird.  In our family, I am sort of normal!!"...and the laughter lasted for a couple of miles as we pondered that one :-)


Lindsay said...

What a great post :) Glad you are finding some answers for Matthew. Kenny's courage and wisdom blow me away. He is one amazing boy - he should publish his story. It is incredible!

Jenny said...

Are you keeping copies of the letters you are giving to the homeschool special ed rep? Maybe at this point it would be good to share those copies with the special ed director for your district.

I'm not sure how the laws for homeschool special ed and classroom special ed work, but in a mainstream classroom if a parent were to write a letter requesting special ed evaluations then a clock would start ticking. By law that child would need to be assessed in a certain time period.

So hearing "Wow! I always learn so much from you," would really tick me off if I was asking for help.