Tuesday, January 31, 2012

Hope and Promise!

It's been over a week since I have written a proper post, and I still feel as if I am not really "in the groove" to write anything very well.  But it's time to get back on the horse, so to speak, so here I am!  Funny how this  works, there are times when almost every day I feel the need to sit and type, recording something that feels important for one reason or another.  Then there are other periods, like recently, when it feels as if things need to be ruminated on, experienced, and puzzled over.  There are a lot of things going on in my life right now, all unrelated to one another, all requiring some pondering and evaluation.  I need to be very intentional in my approach with a few key issues, and mindful of listening for God's nudge here or there.  I also seem to be working with some Big Ideas about nothing all that important, but on the edge of new understandings and that always takes time for things to settle inside.  It sort of feels like I am reaching a new level of maturity, or on the brink of it anyway.

One of the biggies has been with Kenny.  I haven't blogged about something going on with him, not because I didn't want to share, but because I just haven't been blogging as I took my mini-sabbatical.  The more research I have done on auditory processing disorder (APD), the more I have seen that there is crossover with ADD-like symptoms.  Kenny is not at all hyperactive, but in listening to the words he used as he describes what is going on in his head sometimes, Dominick and I decided that maybe there is even more going on than we think.  I wrote a two page letter and gave it to our family MD, describing Kenny's challenges, what we are seeing, and asking if he thought it was worth trying medication for Attention Deficit Disorder (ADD).  We had an appointment a couple of weeks ago with him, and he told us that while he agreed based upon what I shared that he felt APD was definitely part of the problem, he also felt it would be worthwhile to give meds a try for ADD.  As he said, there is no harm in giving it a trial period, starting with the lowest dose possible and working our way up, and we'll see if we notice any difference.  He felt there was definitely enough going on to warrant it, and he said he knew we were not at all the kind of parents to jump to this first.

We decided to go for it, as I don't want to look back in 10 years saying "Maybe we should have tried..."  We spoke at length about Kenny, and our MD said something that helped me feel for the first time since Kenny came home that someone understood...and funny, but it was him saying "We know that children from these backgrounds experience a lack of stimulation and life experiences that changes them forever, and I can't sit here and tell you that I can isolate what is going on with Kenny...there is too much we will never really understand.  As his parent, you already know there are probably lots of different things going on, and maybe you'll discover what they all are, and maybe not.  But with a kid like Kenny, all you can do is look at every possible thing that fits, try and address it, and eliminate that which doesn't work.  He may have ADD or he may not, but you won't know until you try.  He's lucky to have such pro-active parents who will keep looking at things."  Sounds so simple, doesn't it?  "Too much we will never understand."...what I loved was that a professional took me seriously, is joining with us to try and figure it out, and isn't passing the buck because he doesn't know.

We walked out of the office with a prescription for the lowest dose of Concerta, and an open mind...not even a hopeful mind or any sense of anticipation of change to come.  Just a plain old "Well, it's not going to hurt...and maybe, if we get lucky, it'll help a little."

Two weeks later, and I think we can now safely say that it is clear it is making a difference, even at the lowest dose.  We weren't sure at first, and then you have doubts because the changes are slight, and you also don't want to be led by the "power of suggestion".  Dominick and I looked at each other after about a week and asked if we thought we were seeing any difference, and we both said we thought we might be, but we'd reserve judgment.  A couple of days ago Kenny forgot to take his Concerta, and while I was in Denver Dominick said there was an obvious difference.  Today, we had it confirmed solidly.  We have seen little things, like after about 4 days Kenny sat down and spent over 2 hours on his math, without a break, and got his first 100% ever.  He was whooping over that one!  It had only been 4 days though, and we know it surely couldn't have made that much of a difference.  Today though, he had a math test, and after turning it in, he decided on his own to take it back to review it one last time saying "I always miss problems because I read it too fast and don't take my time, not because I don't know how to do the math right."  He then corrected two problems that he had misread, and turned it in...and got a 95%.

The real confirmation though came out of the blue, when his TaeKwonDo instructor spoke to him tonight, having no idea at all that Kenny had started on Concerta, and said he had noticed a real difference in Kenny's concentration and effort the past two weeks, telling him he was finally making good progress.  Hmmmm...guess we are not imagining it!  Kenny was never hyperactive, and could sit still, stay on task reasonably well...at least physically...and doesn't present as a typically ADD type kid in many ways.  We have no real behavioral problems, no challenging behaviors other than the things I have shared here which are more "scatterbrained" and not at all defiant.  He does have poor judgment and doesn't read social cues well much of the time, but when engaged he can sit for hours at something, which is why we didn't immediately jump to this as a possible solution.  BUT...his thoughts are often jumbled, he has an inability to organize thoughts and ideas in logical order sometimes, and he does have poor impulse control versus our other kids.  Not terribly bad, just not as good.

We will go back in two weeks and adjust the meds up, keeping on until we get to a dose that appears to be a good fit.  He says he feels nothing different really, just the ability to quiet his brain a little.  We also have to figure out how to cover the cost, as it is not inexpensive, but there is no way we are not going to keep going with it now, after seeing some real positive results.  Now, this is not going to be the total solution, and even today I saw clear evidence of the auditory processing disorder sneaking in as he asked me 4 times to spell a very simple 5 letter  word and still got it written down wrong, or when he "misheard" instructions I gave him for an activity.  However, it is sort of like being a detective, and if we can whittle away at things one at a time, and as I shared with my friend, if we can make even 5% difference for him in 3 or 4 areas, then overall we will make a 20% difference or more, and for a kid like Kenny even improving things a mere 10% could eventually make the difference between independence as an adult or no independence.

For the first time in a very long time, I think we feel encouraged.  I also forced myself to take a little internal assessment of where we were a year and a half ago, before starting homeschooling with Kenny, and where we are now.  Stepping outside of the situation for a more distanced look at it, and I realized that we have come far.  We have climbed the equivalent of Mt. Everest with Kenny.  He is learning, and learning a lot.  He is able to apply his learning,  he is remembering things well when taught in ways that work for him.  He is connecting the dots in numerous ways, often more deeply than others.  He is reading at grade level now, not 4 grades below.  He feels incredibly successful much of the time these days, he participates, he doesn't zone out, he is the hardest working of all 5 of our kids when it comes to school work, and in our family with no complainers and all kids being diligent, that says a lot.  When he first came home for school he was the laziest, he pushed himself the least, he had the lowest expectations of himself.  Somewhere along the line, that flipped for him, but I'll admit I push all the kids very hard without exception.  We play hard, but we work hard as well.

The things we still battle are auditory processing for sure, word retrieval which affects him in daily conversation all the time as he simply can not always pull up the information or the words he wants to use even though he knows them or later will be able to access them.  His memory issues will likely plague him forever.  His spelling will have hiccups for the remainder of his life.  A huge sign which confirms bigger problems is his inability to hear syllables.  In a recent activity he got more than half wrong out of 50, as he simply can not hear the rhythm of language and break it apart.  We still need to work some on taking social cues and being appropriate in conversation.  All that being said though, he is making it, excelling in math, seeing himself attending college and not viewing himself as less than anyone else.  He is beginning to understand he needs to use "his tools", be it a dictionary or thesaurus, taking notes, or counting on his siblings to help him remember something.  Just today we were talking about the boys cleaning their room and how they should attack it when it is at it's worst.  Kenny said "Matthew helps me by reminding me what to do, and what I started but didn't finish.  Without him organizing me, it would take me twice as long." and so he is learning to capitalize on the assistance of others and not resent it or try and control it, which for him is a struggle.

What's next?  Well, we have two more things we want to try, and somehow have to come up with the money for.  One is this:

This is a special education tool, and is an electronic reading pen.  It scans words or paragraphs and can read them out loud, then can also come up with a definition on the little screen.  Kenny reads well enough right now, but his big problem is he gets stuck with certain words even if they are said out loud a hundred times, he can't retrieve them from his brain so it's like stuttering when reading and not being able to go forward.  This would reinforce his speech work, which needs a LOT of help still, would help him be able to have a way to help himself when he gets to one of those words he simply can not remember no matter how hard he tries, and would be a a way to more self-reliance in an area we may never be able to truly "fix".  The bad thing is it is $280, so we are going to save for this one and see if it can work for him.  I think it could be enormously helpful.

The next thing on our list is one much harder to accomplish, simply due to cost.  We need to get him going with FastForward, the online software therapy program for auditory processing which also works for ADD as well.  We have had to give up on Earobics, the far less expensive software program for ADP because Kenny hit a brick wall with it, and simply can not move ahead.  It is one of the reasons we are 100% certain, along with the comments of others who have worked with him, that ADP is part of his mix as well.  The ways in which he got stumped on this program, and how early on in it he was stopped cold, were surprisingly low level, and FastForward has been mentioned as a much better program for kids that try Earobics and fail with it.  However, their web site says the average length of the program is 3-6 months, and we are assuming the 6 months because of the severity of Kenny's issues and the obvious challenge he had with even the lowest level of Earobics.  It's $500 per month, and that is just out of reach unless we borrow it.  It is so frustrating, as the school district SHOULD be paying for it, as they would for any other kid, if they didn't have an "out" based upon his non-native speaker status and his low IQ scores...scores that now even the special ed teacher working with him said completely puzzled him.  But because of those two things, we are thwarted in getting help for Kenny with this, and they will never have to do anything for it so we have to come up with ways to work with it on our own.  Right now we just aren't certain how we will do it, but we will figure it out somehow.  If we don't give it a try, it is another one of those things that I don't want to have regrets over 10 years from now, and we really can't leave any stone unturned in trying to help Kenny work his way toward a happy and productive life.

So there you have it, and I hope that somehow sharing this will provide some insight for all you parents out there who also might be struggling with a child who has challenges that can not easily be nailed down.  Maybe by sharing what we have tried, what we deal with every day, what works and what has not worked, someone out there will be spared a little of the trial and error phase, or be led to something new they had never heard of or tried which might help their child.  There are ongoing costs which can cripple families, costs which are outside the scope of what we expected, and sometimes seem beyond our capacity to keep up with.  Then so many of us with older adoptees have kids who need help, and yet no one seems able to provide that help.  We have to become their biggest advocates, their researchers, their therapists, their detectives.  It isn't easy, it leads to oodles of doubts, lots of trial and error, and a ton of hands on hard work.  Here we are, home 4 1/2 years with Kenny, homeschooling a year and a half, and I think I am barely getting to the root of a lot of things.  I do see how he learns now and am able to find materials that match his style.  I am understanding that much of what I thought was purposeful was not, and I am forgiving myself as he has forgiven me for not understanding that earlier on.  We are correcting bad habits he fell into because he had simply given up on ever being able to keep up or even learn at all, but that too takes time.  Luckily, Kenny is gracious with his parents, and sees how hard it is for us too.

But we have new hope, we have slivers of light sneaking into the tunnel where once there were none.  Promise is lurking in the background, and that keeps us all going.  One day, I will declare this right here, Kenny will surprise us all.  One day, he will graduate high school and attend college.  One day, he will make it in the real world.  One day, we will look back on the 12 year old boy who couldn't even read, and smile and say "See what love can do?  It keeps you from quitting!", and Kenny will give his broadest grin ever and say "Love Wins!".


Karon and John said...

Wow Cindy, thanks so much for taking the time to share this. I am struggling with many of the same issues and trying to problem solv like you for both of our boys. There are things going on, but without the benfit of seeming lots of other kids their age with similar backgrounds it is hard to know what is "normal" and how to go about dealing with it.

Anonymous said...

Thank you for sharing the ongoing challenges and triumphs, for learning that ADD medication helps with part of Kenny's thinking process is a triumph.

My understanding (extremely limited)is that there is ADD and ADHD, the H being hyperactivity. I guess I'll need to study up some.

I have no doubt that your prediction for Kenny is correct. Kenny already has his own fan club through church, the blog, his other activities. He is such a refreshing delight to be around.

Each of your children warms hearts and brings unique reactions to their unique personalities--not to mention Mom and Dad.

Once again, thanks for letting me be a guest in your lives--beats by miles even the best of television. This is reality, and in it love wins.


Christina said...

I am glad that concerta is working for you. We have 2 kids who are ADHD and the H is for hyperactive... then our oldest was a harder puzzle. We also feel we get parts of the pieces together, and then... we ended up trying meds for ADD (no focus but not hyperactive) and had great results. The basketball coach remarked at how well he was remembering the plays... Same kind of experience. I am blessed to hear that some of your puzzle is put together with a better fit now :) Blessings!

Anonymous said...

Glad to hear you are making some progress!

It sounds like kenny has ADHD-PI...technically, in the medical world/the DSM there is not such thing as "ADD"... correct diagnostic term is attention deficit hyperactivity disorder- with a "primarily inattentive" specifier (ADHD -PI)... there is some new research/thoughts into the possibiity of ADHD-PI actually being SCT/sluggish cognitive tempo and another disorder separate from ADHD. There are no diagnostic inclusions for SCT but it is interesting research and reading none the less for the future of attention disorders.

Speaking from personal experience, as a college student, i take ritalin for attention difficulties myself and, similar to kenney, most definitely do not fit the "stereotypical" picture of an ADHD child. I was lucky enough to get spotted as a child and the help/medication i needed as a child to now be a high functioning college student.

I applaud your advocate efforts for kenney!

Anonymous said...

Glad to hear that the meds are helping, and I DON'T mean to rain on your parade. But there was an interesting article in the NYT on Sunday discussing the fact that there is no proven long term benefit of ADD meds. Not trying to say you shouldn't be doing this . . . I don't think it's that simple. But thought you would like the info nonetheless. Here's a link: http://www.nytimes.com/2012/01/29/opinion/sunday/childrens-add-drugs-dont-work-long-term.html

Anonymous said...

I sent you an email with some thoughts and a couple of websites. I may be way off the mark at this point, but it seems to me there are surely more resources out there that you just haven't touched base with yet, Cindy. Keep asking questions, as I know you will...when you have time! And I would say to ask your dr about other resources he might know about. There also might be a social worker in your clinic or hospital who would know how to direct you to services or organizations that can help people with learning disabilities. I know they're usually dealing with medical issues, but they might know who to direct you to.

Kelly and Sne said...

Great that you have found something that helps. ADD is an executive functioning issue which impacts attention to detail as well as organization and other areas that could impact abiltiy to listen and follow through on tasks. I can really tell with our daughter who has early signs of ADHD (with emphasis on the H!) as she is terrible with attending to details and it is already impacting her development. We hope to teach her techniques to manage it herself - and she has actually come a long way with sitting still and paying attention - but there are some things that will be difficult to manage so I envision meds in her future too so she can learn. Also - have you spoken with Erin Herman about the school funding situation? She gave me some good advice about using the advocate system to get what you need for your child and has had good results getting reimbursed for programs for her daughter. In any case - these wins for Kenny will mean so much to him and hopefully will start him on a virtuous cycle.

Anonymous said...

Yay! I am so happy for Kenny. It is so great that you have found a piece of the puzzle and we pray more solutions will present themselves. Greetings to all of you.
Teresa F.