Thursday, February 02, 2012

A Reminder...

MOUSE UPDATE:  After a long, difficult night listening to two male mice fighting, the boys decided to try and return the mice to exchange for females.  After researching on the internet and discovering that male mice should not be kept together, it was off to the pet shop they went, cage in hand to return it as well.

Dominick stood back and let the Josh and Kenny explain to the manager that the clerk the day before had given them incorrect information about the cage accommodating mice.  Evidently, the manager tried to intimidate the kids a bit and Dominick had to step in.  He said it was not the boys' fault that their clerk was new and didn't know better, as the boys had asked and bought the cage based upon her answer.  After making it clear that he was not backing down, the manager agreed begrudgingly to refund the price of the cage.  They also agreed to exchange the mice, because that too had been asked about and incorrect information had been provided.  I am glad Dominick went and I did not, so that I didn't have to put on my Mean Mom face :-)

So, we know have two cute little female mice, living happily together in their new home.  One is missing an eye, and Josh said he felt like it needed to be loved too.  Now, if God is smiling on us, we will NOT have mouseletts running around anytime soon.  I was thinking it would be cool if I could find some mouse experiments somewhere for us to do, no...not dissecting (as Josh looked at me in horror as I suggested this), but mazes or testing against hamsters or something.

As long as they are living harmoniously together, we are all good!

As of today we are done with the special ed evaluation with Kenny, much to my frustration.  I need to regroup, as I was told I am worrying too much, that Kenny is extremely intelligent and we have nothing at all to worry about.  This is after yesterday Kenny once again forgot his phone number completely...not even after me nudging him could he recall it, so we have to reteach that again.  Just like so many things we need to reteach even after they at first appear solidly cemented.

In speaking with the special ed teacher, I said that I knew Kenny was very bright and was not at all surprised that he also saw this, as that is what I have been saying for years.  Then I asked him why, if everything was indeed "OK", did Kenny's cognitive and IQ tests reflect such low functioning.  His answer?  "Well, that puzzles me too, as it totally doesn't jive with the kid I am seeing here.  He does not belong in traditional special ed as he is way above the other kids I am working with...not at all on the same level and I could never have the sorts of conversations with them that I have with him."  When I asked what we might look at for his memory issues he said, get this, "That's what wallets are for, he can always write his phone number and put it in his wallet." Even Kenny couldn't contain a chuckle in response to that one, as he knows the only thing that means is he will lose his wallet and not remember where it is!!

I shared with Lael today, who so kindly watched the other kids again, that I need to find that one person who can crack the code, someone who will look at the whole kid, who has a depth and breadth of experience that others don't have.  The problem is there are too many things going on with him that cross over one another, and I don't know where to go from here.  There is no way Kenny is "normal" in the way his brain functions, anyone who knows him can tell you that.  Note that I do not mean Kenny is dumb, stupid, incapable or any such thing.  His brain just processes information wrong.

And I have to laugh out loud at the thought of his brain functioning "normally" and us having no reason to worry as was suggested, as I again picture him standing in front of us holding the ceramic top to the toilet, thinking he was bringing me the seat cover I wanted to wash.

Naaahhh...we have no reason to worry at all.

Sooooooooo, back to the drawing board.  It's hard not to want to give our all to him.  A couple of days ago, when it was just he and I coming home from his orthodontist appointment, he started crying as we hashed some of this.  He felt badly that so much of our time, effort and energy goes into getting him the help that he needs, and it takes it away from the other kids.  I reassured him that there would be times that came along when it would be one of the others that needed more of us, that in a family it always seems to rotate.  I told him "You weren't around when Josh came home and it took three long years of intense work with him to help him get where he is today.  So he already had his turn!!" and that got him laughing a little.

We talked about how families lean on one another and stick by you, never giving up, and that one day it would be our turn when Dominick and I grow old.  He digested that a little, then said "You know Mommy, there is no way any of us could ever repay you for all you do for us.  Some of us might not even be alive if it weren't for you and Daddy."  That sat there for a moment, hovering in the car a bit, then I replied "Well, maybe you're right, you know enough that I can't lie to you and say that for a couple of you that might not be true.  But it's never, ever about paying anyone back.  Love doesn't work that way, there's never a tally sheet."  He then said "That's what I like best about you and Daddy, you love everyone equal, you don't have any favorites.  You know, before I came home with you guys, I never knew what love really was.  It took me a long time to think of you both as real parents, and to get what that meant.  You were just people like at the orphanage who fed me and stuff.  Now that I am older and have been part of this family for so long, I don't know why I didn't understand what love really was or how to do it."  I said "I do, you have to experience it to be able to return it."  Kenny then looked up at me and said "Well, I know how to love now!"   His face brightened, and we hugged, and set off to go inside the store.

And so we keep on going, never giving up, trying everything we can think of to help maximize what we can.  There is so much potential there, hidden between quirky brain function.  There is so much potential in all of them, and I pray every single day that we are doing all that is possible to help them lead lives of meaning, lives filled with joy, lives that value the things worth valuing.  It's not about IQ or test scores, it's not about peak performance.  It's about what Kenny spoke of, learning to love.  Everything else is just lower on the list.

Maybe I needed that reminder this week...

7 comments:

Anonymous said...

You're teaching not only your children, but so many more of us, what love is by sharing the joys and frustrations of your family life on this blog, Cindy! I, for one, am grateful! God continue to guide your way!
Love, peace, and blessings!
Kaye

Karon and John said...

I am sure you know this, but specail education is not just for those who struffle academicaly. I have several students on my case load with IEP's that have nothing to do with their intelegance, but rather with HOW they learn. You will figure it out. It will be different and it will be worth it. Hang in there, and in the mean time make sure you have his saftey bases covered.

Meg said...

I'm a homeschooling mom of two and found your blog while researching Auditory Processing Disorder. My 7year old has diagnoses of ADD, APD, and SID. She is an extremely bright child and a gifted artist and musician. She also excels at sports. When we are out in the "real" world, at music lessons or art classes, or visiting a museum, I'm constantly complimented on what an intelligent, bright, and gifted child she is. People would never guess that she still does not recognize all of the alphabet, cannot do simple addition, and constantly has to have directions repeated to her. I understand your frustration. It sometimes feels like I'm banging my head against a wall (ok, it always feels that way). I'm having to let go of my image of her academically excelling, and instead help her to shine in those areas where she can. I'm a medical doctor and my husband is a mathematician, and it was very hard for us to let go and realize that our child may not be capable of achieving traditional success and higher degrees, but we are giving her every chance to achieve it outside of academics. Sending hugs through the computer to another frustrated mom who just wants the world to see how wonderful their child is and define them not by what they can't do, but by what they can do.

Anonymous said...

At the risk of sounding like a traitor, I think the special ed teacher is on to something. I wonder if any of us has much control over what, when, and how we worry, but if you find you can sort out some of this, I would concentrate on those things that may be under your control now and, as much as possible, let go of your vision of Kenny's future. That's where the trusting in God may have to be heavily leaned upon. What can you, the whole family, and friends do today. As much as you can trust that what you do today will make--as it already has--a difference in tomorrow and all the tomorrows of Kenny's (and the other children's) life in the future.

Just asking the impossible,
Lael

Kelly and Sne said...

First, I want to say again how utterly blown over I am by the emotional maturity of your children. Amazing for their ages. And I also want to point out that, according to many books I've read, emotional intelligence is a much greater contributor to success in life than book smarts.

That said, I don't know how much can be done for some neuro issues such as memory deficits except using an "external" brain or other techniques to assist (like writing your phone number in a wallet). Not that I would give up on trying to work on it - but you may want to also make acceptance of shortcomings (in areas that he can't impact) ok as well and find ways to "work around it" and still learn/progress/succeed. I have been reading a somewhat technical book on Vygotsky's approach to childhood development (called "Tools of the Mind") and many of his techniques are targeted at kids with memory, APD and attention/impulsiveness issues. They seem very simple and almost intuitive to implement - it would be worth reading and trying some of the techniques as I think they would be very effective in Kenny's situation. I'd send you my copy but I've dogeared so many pages I plan on using it often.

Finally, I hate to be an armchair specialist and I admit I know nothing about her background, but Meg's daughter sounds like a classic case of ARND (alcohol-related neuro-disorder). The ADD, APD and other deficits - as well as strengths in sports and creative arts - are very common in FAE kids.

Anonymous said...

Sounds something like my daughter. She is "gifted" in some ways (ballet for example) but struggles with common sense decisions, memory issues, and seems to have very little ablility to generalize -- to learn something in one situation and apply it to another. Classic FASD/ARND issues from what I have learned. One expert has said, "No success will go unpunished," as we routinely expect that her memory will work again NEXT time. Bad mistake. Still wondering how to encourage J, as she seems to give up on re-learning anything: why bother when it may be gone AGAIN soon? Your son is blessed to have you and the whole family in his corner ... J has 2 brothers who cannot relate to her struggles, and although we try to encourage her, she can feel very alone. So thankful that she is pretty much emotionally stable, and is not going anywhere soon although she turns 18 This Month. We have more time to encourage her and seek His direction together with her ... Thanks for your blog !! -- R in SL

Michelle said...

Einstein never knew his phone number. He said he never memorized anything he could just look up. Just sayin.....

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