The things we share

     For the first six years of C’s life, I took care of him without pause. We were running the circuit from specialist to specialist doing test after test to do whatever we needed to do to get him walking, talking, and feeling well. Once we got past all that, it was time to get back to life. About two years ago, I started to take care of myself.

     For six years, I didn’t really get sick or worry about my own health in any way. Now, it seems, my body is playing catch up, and I’ve been down far more than I’ve been up lately. Whether it’s due to neglect or merely that the floodgates have opened, I’m not sure, but all of a sudden I feel as though I’m spending as much time in the doctor’s office as any self-respecting little old lady.

     What I find so interesting is that so much of what’s going on with me mirrors what we’ve gone through with C. Gluten sensitivity, multiple food allergies, breathing issues, joint pain, and even some possible heart problems all seem to be rearing their ugly heads. Even more interesting is that I’m exhibiting symptoms my mother started having at 60. Mine started in my late 30s, and C’s started at birth. It would seem that not only are some of the issues genetic, but that they are worsening with the generations.

     I feel as though I am the key to the issue, and C is the lock. If I can change the course of my own health, coupled with addressing C’s issues so early, will we be able to overcome our own genetic predispositions? I’m not sure who is the lab and who is the rat in this scenario, but we’ll continue running that maze over and over again in the quest to find the cheese.

To all our friends at MM School

    Okay, all of you wildwomen at MM School, and you know who you are (I wish I did, would you comment sometime??), out with it! I had a ton of hits from the school district email site the other day, so I know someone is forwarding me around! But I need to post a disclaimer…I’m hoping you all realize that when I was talking about a bad principal in my last post, I was talking about the crazy guy at the school C went to before we moved here. And when I was talking about trusting my judgment, I was talking about the old school. I realized later, after wondering why I had so many hits from the district website, that perhaps my message had been misconstrued. It was very clear to me, dear friends, in my head!! But it may not have transferred to the post, so now this is my version of damage control…

     In case you all don’t know, WE LOVE YOU LADIES! YOU ARE THE BEST!! YOU ROCKED C’S WORLD!! WE WANT TO STAY AT MM SCHOOL FOREVER AND EVERMORE!

     Now forward THAT, will you please??? 

Dizzy

     Right after C’s first day of kindergarten, the principal caught up with me in the parking lot to tell me he thought C should just skip K and go right into first grade because he was so smart. We’d had an extensive meeting with the school team before starting C in order to convey to them our concern not with academic issues, but with social ones. Hadn’t this guy heard anything we’d said? In hindsight, that was the beginning of the end of “The Terrible Montessori Experiment,” (see here and here) which came to its final, and extremely painful, end a scant few months later.

     I’ll never forget some of the principal’s parting words to us. “C will never qualify for an IEP anywhere. He doesn’t belong on one. He’s too smart.” (Nevermind that he’d already been on one for three years.) It was all I could do not to send this idiot a copy of the full IEP C ended up on at the public school 15 minutes up the road – along with the full IEP he’s had ever since at yet another school. The principal’s complete misunderstanding of not only hyperlexia, but high functioning autism/asperger’s, was a rude awakening for us that has made us skittish ever since. That caution has fortunately been unnecessary as since we left that charter school nightmare we have worked with people who actually know what they are doing.

     Now, however, it has come full circle. As C prepares to enter third grade, his end of year IEP meeting brought a bit of a surprise. Two of the members of C’s team, and arguably two of the ones who know him best, feel we should consider having C repeat second grade. We are starting to see some comprehension issues coupled with challenging social issues as the maturity gap between C and his peers continues to grow. The thought is that perhaps with younger children, C will emerge as a leader in his class instead of struggling to make connections and friends. It’s not a bad idea, and it’s one Husband and I have considered extensively since that meeting, although we have decided not to pursue it.

     Yet I find it almost amusing that we have gone from someone wanting C to skip a grade to potentially repeating one in just two short years. It reminds me how important it is for parents to listen to their instincts when it comes to the people with whom we trust our children. Clearly I should’ve listened to those bells going off in my head that first day of kindergarten as it became obvious to me that the principal had no clue how to deal with a child like C, and that skipping him ahead a grade would’ve been a disaster given his social challenges and maturity level. My only regret is that we even bothered to return to the school on the second day and didn’t move to C’s current school that much sooner.

Memory

     We used to live in a seemingly idyllic neighborhood, one where everyone used their front porches, kids were let loose to play freely in the center greenbelt without supervision, and everyone knew everyone else. It was almost difficult to get any privacy there, really. It was the kind of place my Mom thinks could have cured C’s autism (although she would never use that word) had we stayed. She’s somewhat of the belief that lack of experiences alone is really at the core of C’s issues; as if we just let him run around unsupervised with the other kids in the neighborhood long enough, he would eventually overcome his social challenges.

     There was another boy with autism in the neighborhood – at least I think so. He was older, high school aged, and was also allowed to wander freely, sometimes appearing in our back yard silently and leaving moments later. The first time I encountered him, I was in our driveway with C, and the boy walked up to us, baseball bat in hand and an odd look on his face. I admit to being immediately frightened, not knowing who he was or anything about him. It didn’t take me long to figure it out, however, and my fear dissipated.

     I never met his parents, and wondered about their lives with this boy of few words. Had they struggled with his diagnosis early on? Did they worry about his future? Had they reached the point of acceptance of how he got along in the world, knowing he would continue to wander from house to house in our seemingly safe little spot on this earth?

     I’d like to think I would’ve gotten to know his family had we stayed more than a year in that little utopia, and they us. Yet my lingering memory of this boy was watching from an upstairs window one morning while he ran shrieking down the street in only his underwear to hug the neighborhood matriarch while she was on her morning walk. She loved him more than anyone, and clearly the feeling was reciprocated, as she greeting him with open arms and a chuckle. I watched as his Mom chased after him and hoped that if not that day, sometime later she would smile at that memory just like I do.

Wordless Wednesday

There’s no room for boredom

     I’ve been working on some big projects around the house lately, one of which includes organizing old photos. On several past occasions I’ve tried to get this chore completed, but always get hung up partway through. Then we do something crazy like move for the zillionth time since Husband and I married nearly twelve years ago, and I eventually forget where I was and have to start over.

     This time, however, it will get done. I’m already halfway through year 2000 and moving along quickly. I’ve noticed, however, that something drastic seems to have happened in 2001. There’s pretty much a complete explosion in organization around that time, and the project becomes far more messy and difficult to complete. Yes, you guessed it, C was born in March, 2001.

     From that point on, life has been what I consider to be barely controlled chaos. The constant feeling of chasing one’s own tail isn’t exactly conducive to highly organized photo albums. Whether it’s just having a child in general or having the particular child we are so lucky to have I’m not sure, but either way it just is what it is. I suppose, however, that for the first time, I’m actually seeing the humor in this reality, and recognizing that this is in fact the way life is supposed to be. Or, at the very least, this is the way my life is supposed to be. Slightly this side of insanity, a tad over the line of  uncivilized, bordering on complete folly, and just a tiny bit past what I would call totally wild. But nothing if not entertaining.

No middle ground

     In C’s black and white world, there’s not much wiggle room; things either are or they aren’t, they will or they won’t, they do or they don’t. What I’ve realized is that for C, they mostly are, will, or do. He’s incredibly kind hearted and seems to forgive even the worst transgressions.

     This year especially, I’ve tried to explain to him how a child who is mean to him might have had a rough day, or maybe all they know is how to pick on someone else. Ever the bleeding heart, I am reluctant to attribute the word “bad” to a child, any child, even the one being unkind to my own.

     But in the last few days of school, I was pushed over the edge. Between one child calling C a “d&*k,” another shoving him repeatedly at morning line-up despite C’s sobs, and yet another birthday party to which C was not invited, I gave up. I figured it was time to explain to C the facts of life. Some people (and therefore some kids, I suppose) are just mean. I told him there would always be people that were unfriendly to him, and the trick was to get as far away from them as possible. 

     Finally ready to give in to C’s black and white world was I. It’s okay, I told him, to not like people. We don’t have to try and explain away their behavior and give them the benefit of the doubt. Yet C, in his effervescent generosity, reminded me he just is who he is by saying, “But Mom, I like everybody.”

The core of the matter

     There are always memorable comments made at C’s IEP meetings; comments that stick in my head for one reason or another. Usually, it’s because someone on his team has so beautifully captured something about him, and I hold the thought close to figure out what to do with it later. Long past the point of leaving an IEP meeting feeling as though my heart has been ripped from my chest and stomped on, I now feel as though the members of C’s team so closely grasp both his strengths and challenges that I find myself inspired to soldier on in shepherding this amazing child.  

     At C’s most recent IEP meeting it was the statement that C “has no core group of close friends” that stuck with me afterward. Friendly with most everyone, C seems to remain the friendliest kid in the world without any real friends. He’s definitely doing better - he has settled down and the kids seem to accept him more. Yet he continues to be, at his very center, alone. It struck me that this really is the crux of the issue for C. We can work around his handwriting challenges, and we’ll continue to address reading comprehension as the work becomes more difficult. It remains, however, that what none of us can seem to help him grasp is the very thing he needs the most.

C-isms, XV

After telling C a friend of mine died…“Mommy, maybe you should call that person and see what Heaven’s like!!!!”

“Mom, where’s the back of your head???”

“G’s day was just like Alexander’s. He had a ‘terrible, horrible, no good, very bad day.’”

“Mommy, if John F. Kennedy, hadn’t been assassinated, he’d still be alive.”

“Mommy, could you give me some snuggles? Because some tears are about to fall out of me.”

From writing journal with prompts provided…

Outer space….”is a crayon color. Outer space is a place where space men live. The planets are Neptune, Mercury, Earth, Jupiter, Venus, Ploto, Moon. There is Saturn and there is even constillations. There is black holes. There is 16 moons on Jupiter. There are astrodies. There is a milky way. One of my favorite games takes place in space and it’s called Galaga 88.” (By the way, this is EXACTLY how C talks.)

In the future…”is something different.”

A museum…“is where things that are old. A museum is a magnificent place. Some museums have dino bones. Some have old-fashined things. Some have fun stuff. Some museums have art. Some museums have pitures.”

A kitchen in a farmhouse…“would be funny.” (Think on that one, readers. You’ll get it. It took me awhile.)

A dream…”is in you when you sleep.”

A light at the end of the tunnel

     In the midst of preparing for C’s upcoming IEP meeting, I’ve quite suddenly realized that the end may be in sight. Since his first IEPs, which were all about his challenges, to his later ones, which seem to be mostly about his strengths, I’ve hoped for C’s graduation from special education. When we first started down this IEP/IFSP road at 9 months, we anticipated C would enter kindergarten without his IEP tagging along. That was back in the day when we hadn’t really quite figured out he had a real diagnosis other than prematurity. Yet kindergarten came and went, with many struggles along the way to indicate the necessity of future special education interventions. 

     Now I’m having conversations with his team about ways we can keep his IEP for the next couple of years while we wait to see what happens in C’s progression. We’re talking as if it’s a given that he will be IEP-less by 5th or 6th grade. It’s the first time we’ve had a potentially realistic end to his involvement with special education. Frankly, I’m not sure how I feel about that. On one hand, it’s an indicator for how well C is doing. The child is astounding. It’s a time for kudos for all of us on C’s team, past and present, who have helped him become the amazing little dude he is.

     At the same time, I know hyperlexia generally includes some academic downfall at some point during the school years, and while we’re seeing bits and pieces of that in terms of reading comprehension, I’m not sure how big or how bad it will get. My sense is that he will struggle as schoolwork becomes more complicated and they move on to more subjective work. As evidenced by the writing section on his most recent standardized testing, where they were asked to write about why the early people didn’t know much about what was in the sky (which was the subject of the previous questions on the test), C summed it all up in just two, brief sentences at the very top of the entire blank page. “The early people didn’t know much. They didn’t have books then.”

     As is usual in C fashion, he hit the nail on the head. it’s hard to argue with his logic. Unfortunately, it was the right nail, wrong head – for standardized testing, at least. We’ve been down this road before with C’s grouping of an apple and a banana together not because they are fruit, but rather because “red and yellow make orange.” Now who can argue with that?

     So as we come to this “Y” in the road, I’m cautiously encouraged. And I’m hoping that someone out there in C’s future academic experience will look at him as a delicious challenge of interesting proportions – someone who can appreciate and capitalize on the inherent truth that red and yellow do in fact make orange.