Monday, November 07, 2011

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.

17 comments:

Joyce said...

Hi Cindy
have you ever looked into the strategies for Sensory Processing disorder - basically there are 3 different responces children have to the sensory input that they recieve. They either are over responsive, under responsive or sensory seeking - to all 8 senses.
One of the treatment is a listening program where every day the child listens to modified music for 30 minutes, with noise blocking earphones - twice a day. IT is supposed to help with brain organising and I do think it has helped my little bloke. If you want to know more you can email me - or see if you can contact an OT for an evaluation.

All the best with all you do
Joyce

Anonymous said...

I would love to put a P.S. on your blog for any reader that might think you are seeing through a mother's eyes and not evaluating Kenny clearly. He is everything you say he is--bright, articulate, loving, seeking deeply and widely, hard working, delightful.

What information can I and your other readers help you find so that your time is a bit less crowded with preliminary research and focused on loving and guiding?

Standing ready,
Lael

Kelly and Sne said...

So happy that you are looking for a success story for him. That is so important. I just read a book called "A Mind at a Time" by Dr Mel Levine. It peels back the onion of the child's brain and dissects learning and areas of learning disability. While it is heavier on understanding how we learn and lighter on interventions, he does talk about how to strengthen specific areas and sometimes all you can do it give them work arounds (like an "external" brain). It may help you to hone in on the weak areas.

Also, my first impression was that something had changed with Kenny and how he is spelling/processing information? If so, perhaps he needs to see a dr.?

Good luck - I don't get to your blog as often as I used to as I am dealing with my own special needs kiddo these days but you are a source of knowledge and inspiration!

Anonymous said...

Hi Cindy,
I have not read all the responses yet, so please forgive any repeat info. First, I was wondering if you have found an unusual increase in everyone's issues since you started the renovation? My thought was that in addition to the already accounted for issues there may be mold, lead, other toxins making the issues that much more pronounced. I wish I had a magical cure. I would use it on my own kids. Have you looked into this http://www.annashousellc.com/miraclechildren.html
I have not had a chance to yet but they were at the RMCHEC and I had picked up a flyer ( handed it of to an employee at the hotel who was looking for help for her daughter) but just now remembered the name of the organization. God Bless you all!
Teresa F

Anonymous said...

Hi Cindy,

I left a comment earlier today, but I don't see it posted- if it does post, I apologize for the repeat :)

I suggest looking into: http://www.icando.org/

It is a neurodevelopmental association that evaluates a child and then give a schedule of brain exercises to help repair and improve where needed. I attended a seminar last year and was very impressed with their presentation and testimonials. The negative is cost, and that is why we did not proceed and have an assessment done. I wonder, though, if they might have scholarships available. Also, you might be able to find a similar organization that would be covered by your school. This organization is Christian, so it would not be.

A smaller step could be working on www.cognitivefun.net every day. This is a website with free brain exercises to work the different aspects of brain function. This is a free version of what was recommended by an international adoption specialist for our son with similar issues.

Lastly- in the seminar I attended they talked about auditory issues. A great exercise for that is books on tape. Part of the time, follow along in the actual book, and part of the time just listen and visualize. Most libraries have lots of these available in all levels.

I am praying for you all!

Melissa in WH

Betsy said...

Hi Cindy-

I am a long time reader of your blog and fellow Kyrgyzstan adoptive parent. I am so grateful that you are looking to help Kenny and have a long list of reasons to truly believe with all your heart that he will can succeed. What a blessing for him! He seems like an outstanding young man.

My husband and I recently attended an adoption conference put on by the Tapestry Adoption Ministry at Irving Bible Church in TX. One of the breakout sessions focused on the work of Dr. Karyn Purvis at the TCU Institute of Child Development. They focus on all kinds of issues in children that result from coming from 'hard places'. Although her website initially seems like it addresses negative behavior (which I know is not an issue for Kenny) they also seem to have folks who focus on sensory issues that may include auditory /learning problems.

While I don't know for sure if they can help, I wanted to throw it out there as another resource. Despite having researched adoption issues & counseling when we adopted Caleb, I had never heard of this institute and it's in my own state!

Here's the info:
TCU Institute of Child Development TCU Box 298920 Fort Worth, Texas 76129 Phone: 817-257-7415 Fax: 817-257-0630 Email: child@tcu.edu www .child.tcu.edu

Praying for Kenny, and for God to sustain you & Dominic and give you guidance as you parent sweet Kenny. And for what it is worth, even though I am a "stranger" - you are doing a fantastic job!

Anonymous said...

Cindy,

I have a 13 year old daughter whom I adopted through the US foster care system. She has struggled for years with auditory processing disorder and academic schoolwork is usually a challenge for her. She experiences success and positive self image from her artistic abilities. I cannot remember if your children have an opportunity to participate in art classes in your community, but Kenny might experience success from them.

Caryn in Indiana

Keera said...

CAPD can definitely be frustrating, I have two in the house, DH and DS. Ensure there is no background noise hum, this can make hearing accurately harder.

Another commentor mentioned sensory processing issues, which often accompany other processing issues. There is a great book called the out of sync child that I found wonderful for understanding what my DS goes through daily. Also contains many helpful strategies.

Sharon said...

Hi Cindy,

I've been meaning to touch base with you again for quite a while, and tonight I am feeling prompted. You may remember me vaguely - our daughter came home a little before Kenny from the same orphanage. When I read about Kenny, I feel like I am reading about Viktoriya (in fact, when I read about Kenny, Olesya and Josh, I could take bits of all three and make a nice replica :) ). Seriously, though, I only scanned the remarks made previously, but I really caught the 'use both sides of the brain' one. We do this with our V all the time. She also has lots of trouble (at times) hearing, deciphering, remembering and following oral instructions. I can repeat things 5 times and she still cannot remember it/get it/follow it. It is always a little bit present, but at times it is overwhelming. It is really very similar. I have not yet found "the trigger" as to why it gets worse at times. I will say emotional issues (past and present) definitely make it more pronounced, as do times of hectic activity and less quiet time/structure in her life. This may be more closely related to some of the attachment snd PTSD-like issues we have dealt with and may not relate to Kenny, but I thought I'd mention them.
One of the best things to help AT THAT MOMENT is for her to do something that uses both sides of the brain - jumping jacks, touching toes with opposite hands so that the left hand reaches across the body and touches the right foot, balancing on one foot and singing a fave song, swinging on a swing - all these work for V and free up her mind. If she's not in a position to do these things, tapping her knees (alternating) with her hands or tapping her toes on the floor (also alternating) can help. Again - these are not going to fix the neurological problems that are present but may help Kenny work through sticky (brain) situations.
We know from brain mapping that V's brain has some 'dark spots' and so can talk to her about those when she is struggling. It gives her a physiological reason for the problem and helps her feel less dumb. If it helps, please feel free to share with Kenny that Viktoriya often struggles with the same thing - it may help him to know it's not just him.
I feel for you - I know this is so frustrating. Kenny is blessed to have you fighting for him. :)
Sorry this is so long!!
Sharon

Anonymous said...

Hi Cindy,

We are in southern Utah & adopted 2 older kids from Uzbekistan in JUN 2010. We used Dr. Boris Gindis of the BG Center to evaluate them. His evaluation was key to getting special education services for one of our boys. He has a satellite in Phoenix, AZ & that's where he saw our boys. It was expensive, but it was well worth the effort. I don't know if their team has specialists in auditory processing disorder, but it may be work a phone call.

qmiller said...

Cindy: Wasn't sure if the assessment that you're looking forward to includes a developmental pediatrician...sometimes can be a really helpful resource and could point you toward the best therapists in your region. Auditory processing disorders are so difficult, but certainly you should be able to look forward to something helping Kenny. Best Wishes!! Quaintance

Tammy said...

Cindy,

Hugs going out to you and your whole family. I know exactly what it's like to see your child struggling and to know something is obviously wrong while having everyone else miss it.

The good and bad news is that CAPD is common. Bad because that means kids are struggling but good because there are proven interventions.

This may sound plain but what about going to an audiologist? They may not be the person with all the answers but can maybe point you in the right direction. My son has sensory problems and had auditory sensitivities so I took him to an audiologist to rule out other problems. I also second the developmental pediatrician and possibly seeing a neurologist because as your pointed out this is clearly a processing problem.

Also, keep in mind that the vestibular sense - balance, knowing where your body is in space, etc. - is directly linked with the inner ear. So some of the coordination and balance problems could all be from the same originating problem.

My son is too young to deal with the school system yet but what I have found with our early intervention people here is that I had to figure out what was wrong on my own, have my son evaluated, then come back to them with the results and then MAYBE they would help. Seems backwards but unfortunately that was how it worked for me. I say make your approach twofold: keep pressuring the school district while also seeking out services and evaluations on your own.

My prayers are with you. I hear your pain, as well as Kenny's from all the way over here. There is nothing worse than feeling powerless to help your child. The Lord will give you the strength and wisdom you need and we will all keep praying for Him to give it to you.

Chris J said...

Hi Cindy,
In case it's helpful, I know there's a well-respected audiologist/capd specialist in Ft. Collins - google Able Kids Foundation.

Also, for Kenny's special skill/passion/success, it sounds like perhaps athletics or academics won't fit the bill for him, but you've often mentioned his interest (and insight) in faith and ministering - could he have a special responsibility with your church or pastor to give him a sense of accomplishment and achievement?

Take care,
Chris J

Anonymous said...

Regarding the lead poisoning...

Has Kenny been tested for lead poisoning? I would think his doctor tested him when he first came home?

Kenny's problems may be related to early childhood exposure to lead. Children under the age of 6 are the most sensitive to the effects of lead. Children absorb up to 50% more lead than adults and since lead is especially neurotoxic, the rapidly developing central nervous systems of children are especially at risk.

Because of its neurotoxicity children often manifest developmental and behavioral symptoms. Learning disabilities, attention problems, hearing loss, anti-social behavior, and (sadly since it is entirely preventable) lowered IQ (On average 7.4 IQ point reduction for each 10 μg/dl increase in blood level). Kenny's symptoms do sound very similar to lead poisoning. However you mention that they seem to come and go, with period of more intense symptoms, and I am not sure this is typical of lead poisoning...

Fortunately(or unfortunately)this is probably the only potential cause of Kenny's problem that you can rule out with a simple blood test and/or x-ray. A blood test measures the current level of lead in the blood, however bone x-ray measures the total dose of lead in your lifetime. The blood test should still come back with elevated lead levels (remember no lead is normal, any amount is considered poisoning) as lead is stored in bone and slowly released into the blood resulting in prolonged exposure to lead despite removal of the initial/actual exposure.

Anyway, definitely ask you doctor about a blood test if he hasn't had one yet! It is a very simple blood draw.

I doubt kaz/kryg has any of the lead bans the U.S. does and that therefore places Kenny as a high risk exposure.

Also, was your rental house made/painted before 1978? If so that is a potential source of lead! Particularly paint dust and chips.

Anonymous Nurse

Flyss said...

I'm currently working at a special needs school and the children do something called Activate:

http://www.valsabinpublications.com/publications/activate/

It's meant to exercise the neural connections between the left and right hemispheres of the brain. We usually do it every day before starting literacy work.

Might be worth a go?

Michele said...

Hi Cindy, Your description of Kenny's struggle with spelling sounds very similar to my own struggles. I have severe learning disabilities. One is ADHD but I don't take any medication for it. I also have auditory discrimination difficulties and a very short short term memory. I can't distinguish between the vowel sounds at all, short long, a sounds from i or e. And still today I can mix up g and j and I will see a word and say it is a totally different word. One day I couldn't for the life of me remember how to spell cookbook, I had no idea of even where to begin looking in the dictionary for the word. My disabilities are more pronounced if I am tired and if I am feeling on the spot. I learned that I was learning disabled at the age of 21. Till then I believed what I had heard, that I didn't put enough attention to my written work and that I was lazy.
So if you are wondering what I do for a living, I'm a primary grade teacher teaching phonics to 5 and 6 year olds. I have a Master degree in education. It was HARD getting through university. I had one prof call me illiterate just because I handed in an essay without any verbs (This was prior to assessment and I didn't notice they were missing). Knowing what is wrong was the most liberating point of my life. Keep fighting for a full assessment. I still have periods of insecurity and shame, but most of the time I remember that I am doing the best I can and that asking for help is not a bad thing.

Ohiomom2121 said...

Dear Cindy,
I would agree that Kenny does not show ADHD symptoms. But, many of the "brain" drugs work on a multitude of problems. I would not pursue them without research, but would look around to see if anyone is showing CAPD results with drugs. Ritalin/stimulants actually calm the brain activity, so if you are leaning more to a "dead spot" theory, these might be the last thing to consider. As many have said, you will have to research and hunt until something seems to make sense, then try it and see if it works, whatever "it" is. I would just say don't rule out drugs entirely without researching whether others are showing results. I don't think our adult son w/ADD could have made it w/o meds, and the effects were quite obvious, even to people who did not know when he was on or off them. Obviously, he was the classic case, but it is too early in Kenny's case to decide to avoid a whole class of options. As I have not parented these issues, I have no idea if meds would help, but I am suggesting that if someone said a med helped something similar, I would search to see if others are reporting the same result. We have a new daughter w/similar odd deficits, and the cross-function things mentioned above are definitely something I will look into. So, thanks for your blog!
Sherry

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