Sunday, September 30, 2012

A Couple of Helpful Ideas for Older Adoptees With Learning Issues

I know there are many who read the blog for whom this will not be a post of interest, but for the very few who need it, I hope this is helpful!!

We have been incredibly blessed to find Kenny in the hands of a super terrific speech therapist this year, who has extensive experience in brain function, early childhood deprivation, and auditory processing disorder.  For the first time, ever really, I feel we have someone working with Kenny who has a deep understanding of what might be going on for him, and what might help.  She has verified, unofficially, that Kenny definitely does have auditory processing issues and is working with us in that area regardless of a diagnosis or not because he so clearly is severely hindered by it.  There are other brain processing issues as well, and she recommended this book to us:


I just received it from Amazon and will be using it to work with Kenny.  She felt this might be very helpful as Kenny's issues mimic mild traumatic brain injury, despite the fact he probably has never had a brain injury. Of course, we don't know that to be true either, but as she explained it this might help in working with the areas of Kenny's brain that are not fully developed due to early lack of stimulation, something many older adoptees from orphanage settings struggle with.  When you read blogs or forum posts written by parents of kids adopted at older ages, it becomes clear that there is a common thread that runs through many of the experiences we have with our children.  Processing and sensory disorders are so common that it is almost a given that a child will have certain issues.  

Another program that she will be using with Kenny once we figure out the logistics of us taking it home with us is something called The Listening Program, found here:  The Listening Program .  It is a program I had looked into last year, which is fairly expensive but is not always effective for everyone. While we thought there was some merit in trying it, we thought we would hold off awhile and see if something else would come along with a more concrete proven success rate before spending the money.  I am super happy we will have the chance to give it a shot and see if it will have any effect on Kenny.  We did discover immediately upon him putting on the headphones in an in office trial that he takes in information much more clearly in his right ear versus his left.  This is important information for me to keep in mind when working with him.

Another program I mentioned in a long ago past was Fast Forward:  Fast ForWord which is to address reading and auditory processing issues.  It is VERY expensive, but has far more data proving it works, sometimes amazingly well. I was surprised when the therapist told me that this was the program she would recommend most for him, because it was evidence based to be effective and she feels Kenny's auditory processing issues could be helped a lot with it.  We are going to look at it carefully based upon her recommendation.

I can't begin to tell you how great it is to talk to someone who understands what our daily life is like with Kenny, who believes us and knows how very hard it is to cope sometimes.  I hadn't even realized how hard the past several years had been until we stumbled upon her and discovered someone who looks at me the minute Kenny does something that is clearly auditory or processing related and says "There it is again."  She was with him 15 minutes...no kidding...the first session when she knew.  She saw him grabbing for words he can't come up with and replacing them with other descriptive words, she saw his puzzled expressions over phrases he should have easily understood, she heard him repeat information back and have it totally wrong, she saw he can't recall his address or phone number...or have her spell things more than one letter at a time.

We are more hopeful than we have ever been that maybe, just maybe, we will see some real progress for Kenny.  She has given us activities to do with him, which seem simple for most people but are hard for him.  For example, we are taking a deck of cards with all the face cards removed, and having him call out the color as we flash the card.  He is supposed to do all 36 cards in 35 seconds.  Then you add in the number and color in 35 seconds, then suit, number and color in 45 seconds.  Sounds easy?  Well, for the standard brain doing all 3 can be a little difficult until you get into the groove, then you can do it.   For Kenny, he could do colors OK, struggled with colors and numbers together but has gradually gotten faster at it.  Doing all 3?  Nope, we will be working on that along time to get it in the time frame.  More interesting, with even just color, if he gets it wrong his brain hiccups totally, and he can waste 15 seconds trying to "restart" his brain and get it working again. That is where you see the real difference between he and the other kids, he can't get his brain back to processing once he hits a glitch.

She has also instructed us to have him walk in a figure 8 pattern while looking directly at me the entire time, and then doing the same thing with the cards.  He can't do it.  Not at all, not even numbers or colors only.

What has been even more interesting is seeing her as she is getting to know Kenny.  She spent time trying to explain the workings of the inner ear, and  Kenny explained all of it quite clearly before she could get too far into her explanation.  When she drew a diagram about the way sounds are made at the front, middle and back of the throat and how all of our mouth parts work together, he also jumped in with observations that made it clear he knew way more than she thought he would.  After our last session she told me "I can totally see why you are fighting so hard for him.  He is incredibly bright, and has come way further than anyone might ever expect a kid to come with the kinds of big challenges he has.  I have never really seen a student like him before with such intelligence that is clearly there and yet so hard to access or work with."  Kenny and his brain are, indeed, an enigma,but maybe we now have someone working with us who can help him get to the next level.  She made certain we knew you can't really "fix" this, but that we can find coping strategies and make improvement in many areas even if all of it still exists.  The big thing is there is a lot of hope for significant improvement and very real ways we can help Kenny learn to work with all that he does have, and we are very grateful for that.
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Now, as an aside, I want to say something here which has nothing to do with the above...and perhaps everything to do with the above.  I have received a couple of judgmental, negative comments lately about things I write on the blog.  Though I don't normally remove such things, thinking that people have the right to their opinion, I have removed these.  I suspect they are from the same person, one who has a problem with the way we parent, and the things I share here.

The anonymity of the internet is a peculiar thing.  It protects us from the reactions of others upon hearing the nasty things we say, it allows us the opportunity to say things we would likely never have the courage to say face to face, and yet find no problem writing on a blog or forum post.  In many ways, it has lead us to an era of unprecedented incivility, and created in us an insensitivity that sometimes blows my mind.  

I was told that I have ongoing insecurity about our kids and their inability to achieve certain things in life, and that I should tell the kids it is OK to "blow their own horns".  What you fail to realize is that maybe...just maybe...there are lots of families out there like ours whose kids deal daily with being years behind their peers, who may never catch up or who fear they won't, kids who do not need the pressure or ideal of success that our society measures everyone by.  Other families need to know that they are not alone in their struggles, and I repeat certain things over and over because I receive anguished email after anguished email sharing that their kids are not "normal" and both parents and children feel awful about themselves because of perceived failings.  They need to know they are not alone, they need to know there is another way of viewing "success"and they can give themselves permission to throw away the old model and create a new one. 

You know why I chose to repeat it?  Because our culture doesn't...it ridicules them, tells them they are failures, bullies them, chews them up and spits them out.  I want parents of kids like ours to see that A) They can often succeed if kids are given free reign to follow their passion, but it very well may not be in areas that are traditionally rewarded or recognized and B)  You can be intentional about looking for success in other (and in my estimation, more important) areas.  Parents of kids like ours, be they adopted or not, hear negative messages daily about our kids, we hear how our kids are rejected for treatments because of low IQ's, we see the panic in our children's eyes when schools force them up to 7th grade because of rules and regulations despite the fact that they are working in 4th grade grammar and writing books, we see how our kids don't make the school sports teams, or how they can't tolerate normal situations the way "normal" kids can...like sounds that disturb them, like instructions they can't take in, or like logic that doesn't quite kick in.  Daily parents of kids like ours battle for services, boost our kids as best we can, and try to help them feel they are as worthwhile as the next kid even if test scores, writing samples, or athletic prowess don't reflect that to others.  It is not just a one time occurrence, we and our children deal with this every single day of our lives for years and years. 

If I can, by repetition, help even one more parent of a child with challenges let go of societal norms for success and grab hold of the special, wonderful, unique ways in which their kids can excel then it is worth your ridicule and scorn, Miss or Mister Commentor.  You may perceive it as being about insecurity, and you are entitled to do your opinion.  There are others who view it as encouragement and learning to live life from a place of measuring success in very different ways.  

As for telling our kids they should learn to "blow their own horns", well, as I try to respond to that, I simply can't.  You and I are way too far apart in our beliefs to even begin to address it.  Blowing your own horn does not equate to real confidence, in fact usually it is the surest sign of someone who is in need of more self-confidence.  I prefer the quiet sort of confidence I see growing daily in our kids, the kind of confidence that comes from allowing them to test their character muscles in situations like the one Angela handled with courage and grace last week, another area in which I failed miserably according to you, because I allowed our daughter to speak her voice as she had asked me how to handle it on her own rather than have me step in and deal with it myself.

I am sorry that this blog is not to your liking, that you feel there are things wrong enough in our family that you felt the need to voice them unkindly.  I have no idea who you are, if we've ever met in person, or what your life is like.  If you don't care for what you find here, I invite you to close the browser window and elect not to return, just like you'd do if MTV were on and you hated rap music.  If you continue to post rude comments, I will delete them, so please don't waste your time typing if all you have to say is negative things thoughtlessly expressed.  You are indeed entitled to your opinion, just as I am entitled to ignore it.

To the rest of you folks who visit us here online, sorry for the above paragraphs.  

6 comments:

Anonymous said...

Cindy,

I hadn't caught the comments on your blog, but as someone who knows you, knows your kids in person, not just as a name on a blog...you do your best given a tough set of circumstances that came with the kids. Which is not to say that your kids are not amazing - because they are. But, being institutionalized (for any amount of time, at any age) comes with a wide range of issues - physical, mental, psychological, learning, etc. You and Dom are doing your absolute best to see that your children reach their full potential, even if it is a fight and a half to find the right help...(see first half of this blog.)

You allow your kids the freedom to exist outside of society's boxes and labels, which is a wonderful gift. I think it is so easy to throw names around and play armchair psychologist, thinking that we can encapsulate complicated situations down to a two word "diagnosis." Unfortunately, reality is far more complicated, which requires complex analysis and an understanding of your kids, where they came from and what you want for them longer term. It's so easy to come to snap judgements and so much harder to take the time to understand another's point of view and situation.

Keep your head up, Cindy, you do your best...and having been there talking over Kenny's issues through the years, I am THRILLED BEYOND BELIEF that you finally found someone who listened to you and who has all the right experience and tools to help.

Best,
Kelly

Anonymous said...

Hi Cindy,

Here is what I respect about your parenting style:

Honesty -- especially when it's tough

acceptance -- of each child for themselves,for who God made them to be

persistence -- whether it's rude behavior, a learning challenge, or education, you don't accept second best in effort from your kids or yourself.

faith -- we're not in this alone, we have someone wiser and stronger to lean on.

love -- tough love when necessary, and deep, warm, clear-eyed love always

God knows the journey your family is on, may He always direct your paths and provide your light.

Much love and encouragement,

Peggy in Virginia

Karon and John said...

First off I am thankful beynd measure for your willingness to be raw and open for it gives me permission to not feel so isolated in a world that prides itself on normalacy. As you well know, I struggle regularly with RAD, PTSD, hearing imparment speech, emotional neglect and sensory processing dissorder. I made a very concious choice, like you, to adopt my two special needs boys. Given the choice and current knowledge, I, like you, would do it all again. And, that does not mean that I would go in less prepared, or more ignorant. We are so few and far between that it is not possible for those of us with the courage and the calling to find community within our tangible world. We must reach out virtualy, and how thankful I am that we can. Those who's families came about the standard way really can't know how very different our lives are. Thank you for speaking up and speaking out. You are an answer to my prayers on so many days.

Kelly and Sne said...

Thank you for the tips - although my daughter is still young and is actually doing pretty well - I am anticipating struggles in school (she already had an IEP at age 3). And being a parent of both an overachieving child who excels academically, socially and now athletically and a child with learning disabilities - I can see firsthand what society rewards. Although I don't have time to visit as often as I used to, I come here to learn from everyone's experience and to appreciate knowing that I am not alone.

Ohiomom2121 said...

Dear Cindy,
I just recommended your blog to a new adoptive mom struggling to figure out the difference between RAD and attachment difficulties. Your blog and a few others helped us to adopt 2 FAS cuties, and to survive the 5 year wait and change in countries to do so. So, please know how valuable your honesty is. Also, we are now exploring neurofeedback and seeing if we can get our insurance to pay for at least part. Their attention difficulties may warrant the ADHD label that may allow it to be partially covered. I have been researching it and it has shown 9 to 24 pt gains in IQ for approximately 80% of LD participants. Our psychologist says he sees gains in a higher % of patients but some are pretty subtle. Kenny comes to mind. I will let you know in 6 to 8 months if it helps ours with cognition. I know it is a huge financial gamble, but maybe as he gets old enough to work that would be something to be saved up for. Google it with fetal alcohol or cognitive performance.
Sherry

Anonymous said...

I'm so sorry you have to encounter the judgments of others, Cindy. You inspire me every time I read your blogs, even though I don't deal with the same issues you do. Your openness and staunch support and unending love for your children are inspiring -- continually! Thank you!
Peace and blessing!
Kaye