Wednesday, September 12, 2012

Big Day for Kenny and Deep Conversations

Today was a big day for Kenny...he finally got his braces off!  Well, at least for now.  He has had them for about 4 years now, I think, and they have done all they can with the top teeth for the time being.  The orthodontist explained to us that: A)  He has a very rotten tooth in front that is blackened and has a huge visible hole in it but we need to keep it if at all possible because its root is at the site of the bone graft and they don't want to keep it there as long as possible. B)  He has an impacted tooth that will have to come out, or will be used to replace a smaller tooth that the dentist might decide to pull.  C)  He will definitely have to have surgery eventually on his lower jaw during which they will break it, remove some bone to shrink its length, and then hold it together with metal plates.  His upper and lower jaws are not aligned properly, which I have been told occurs in 25% of cleft kids, and if we don't attend to this, eventually he may suffer from Temporomandibular Joint Disorder.  However, this can't be done until he reaches full facial maturity which will likely be a couple more years, at the very least.  Until then he will be wearing a retainer 15+ hours a day.  Then, after surgery, he will go back into braces for Phase II.  As the orthodontist explained all of this today I laughed, saying, "Maybe by the time all of this is done we might have it half paid for!"  Total orthodontia cost, for those reading with younger cleft kids and wondering, will be in the neighborhood of $10,000 when all is done.

Tomorrow we have our annual IEP meeting for special education services at the school, and I was reflecting today as I gathered reports to take with us.  It has been such a long road these past five years with Kenny, and yet we have come SO SO far!  As I prepare for the meeting tomorrow I realized that for the first time, I don't have a growing sense of panic about Kenny's future.  That is not to say that all is "fixed", but we have made incredible progress this past year.

Medication for ADD has had a profound impact on Kenny, and has helped him mature in a general way, as well as be able to be far more present.  He still struggles at times with being unable to attend to what is going on around him, but it is NOTHING like it was a year ago.  I am so glad that we tried it on a whim, more to eliminate it as a possibility than anything...and yet it turned out to be a very strong help for him.  Funny, but even with all of Kenny's memory issues, taking his medication is the one thing he remembers to do for certain every single morning.  He said that he remembers because it helps so much, and he is becoming more self-aware so if he feels he is a little "out of whack", he is reminded by that alone to take his pill.  It is something that everyone on the family clearly sees results from, and is well worth the cost.

The Wilson Reading System we have been using for a couple of months has really started to kick in, and we are seeing concrete results unlike anything else we have tried before!!!  If anyone has a struggling reader that is beyond the normal "having a bit of a hard time", I couldn't recommend anything more highly.  It is an arduous, not all that exciting program, but it WORKS.  It also is fairly complex to work with at first, but once you get the hang of it you find it isn't all that hard.  Kenny is finally beginning to apply what he is learning with the System to his free reading, and has broke habits like word guessing, adding in words or leaving words out, etc.  He also is gradually growing more firm with the actual phonics of the letters he really struggles with.  We have a long way to go in that area, I fear, for there are several digraphs and individual sounds that are not sticking, but we do see it is slowly improving.  We expect the program to take us 3 years to complete it, but I think...dare I say it...he will be a fully competent, and perhaps very good reader by then.  It is seriously like magic, but it takes a lot of time and dedication to use this program so it is not for someone who is unwilling to make the commitment to put in the time 3-4 times a week for an hour or more.

Then there is the iPad.  Wow.  I can't even begin to share all the ways in which it has been helpful.  Having only one app on have been enough to make a significant difference for him.  But having the speech apps, the phonics apps, the Chore Pad, and many others we are just beginning to explore is proving to be invaluable.  We are so grateful for the help we received in obtaining one for Kenny.  It may be the single most important long term tool he will ever have.

Kenny and I had a long conversation in the car today, and he told me "Mom, I think I am finally able to see areal future for me.  I don't feel like everything is impossible anymore, and I know that between the two of us I will be able to do just about anything I ever want to do.  It is such a good feeling!  But I know we can't stop now, and that you will have to push me all the way through high school and maybe college if I go to seminary or something."

I told him, "Yea Kenny, I think we have our footing now, and I feel the same way.  You are always going to have deficits, and there will be things that will continue to be hard for you.  But if we keep working as hard as we are now, by the end of high school you will be surprised how far you will have come."

He looked over at me and said, "It's all because of you.  If you hadn't been so sure I was smart, and willing to do so much, I'd never be doing any of the things I can do today even.  Sometimes I feel so lucky to have been adopted by you and Dad.  If I had been adopted into another family, those parents might not have thought I was smart, or even if they did see that I was smart they might not have known what to do. Or maybe they even would have just not wanted to work as hard as you have had to work with me.  We are all really, really lucky."

So are we, Kenny, and I think it every single day of my life.

At tomorrow's meeting I will be able to share our successes.  I will, for the first time, be able to say "We know a lot of what is wrong, and we have found ways to work with it."  Speech is another story, and we have huge mountains to climb, mountains we are standing at the foot of and haven't really even begun to start hiking up.  But one thing at a time, we are checking items off our list:  Attention - Check, Auditory Processing - OK...maybe partial check, Reading - Working on a Check, Spelling - Starting the Check and admitting that may never fully fall into place, Self Esteem - Definite Check, Maturity - partial Check, Surgery - Several Checks with a Few More Waiting.

Becoming Whole - Absolute Check

Interestingly,  Joshie and Angela were in the car alone with me later today, and out of the blue Josh looks up at me and asks, "Mommy, is Kenny disabled?  Is he what they call disabled?"  I don't know what prompted that, and I asked Josh why he was asking.

He said quietly, "Because I don't want him to be."

I sat there for a moment, trying to think of what my response should be.  Finally, I said, "Many people would call Kenny disabled because he does have a lot of things that are hard for him.  He has things wrong with his brain that we will never be able to fix.  But I guess I don't think of Kenny as disabled at all, I just see him as 'Kenny'...who is funny, very deep thinking, and a super sweet son.  Do you think of him as disabled?"

Josh said, "Is it wrong if I say yes, sometimes I do think so?  Like when he can't remember things or he says or does things that don't make any sense.  That doesn't mean I don't love him, but I guess I just worry about his life when he gets older, because so many things are really hard for him."

"I think you are being reasonable, and yet Kenny's problems are not all of who he is.  As long as we all remember that and keep expecting the most out of Kenny, then he will accomplish a lot more than if we don't expect it." I responded.

Angela piped up for the first time saying, "At least he has a family.  Mom, if he were still in the orphanage in Kyrgyzstan, he'd only have a couple years before he was kicked out, and because he grew up there he wouldn't know ANYTHING.  I think he would die, because he would not be able to take care of himself at all...he wouldn't be able to read or write, his mouth would be all messed up.  Of all of us kids, I think Kenny needed our family the most.  And Josh, even if he does grow up and still have problems, he always has us and we'll help him!"  And Josh sagely nodded his head, but then added, "But you're wrong, Angela.  I think I needed our family most.  I think I might have hurt other people because I was so mad all the time.  At least Kenny wouldn't have hurt other people." did a drive from volleyball end up in such a deep conversation?  I don't know why, but it always seems to happen.  I may never really understand what prompts such dialogues, but I can't help but think that it is healthy.

So much healing has occurred throughout our family.  So much yet to happen.  All in all though, it is one  amazing journey even if it isn't easy.

1 comment:

Lindsay said...

I'm just - "wow". At how far Kenny has come and is going; and the way he can discuss it with you and what Josh - so young - can perceive and express. Wow.