Archive for May, 2009

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.

May 25, 2009 at 9:21 pm 10 comments

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.”

May 21, 2009 at 10:39 am 3 comments

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.

May 13, 2009 at 10:05 am 4 comments

In honor of Mother’s Day

     I am reposting my favorite post ever. It’s called “The Other Mother,” and it still makes me cry when I read it. Those feelings are always there, and always raw.

     She watches mothers, constantly, and is fascinated by their sheer volume. She wonders if she will ever take up that much space again? She feels smaller than she used to, less a presence in the outside world, but more a presence in her own home. She feels dependent; on schedules, routines, the refrigerator, her child’s mood. She feels depended on for sheer life. She wonders what would happen if she were no longer here, and she worries about it. She knows kids can survive without mothers, but what about these kids? What about her kid? She wants to download all the information about her child from her brain to something else – just in case.

     She watches mothers, on the playground, at the grocery store, and at school, wondering if they are even aware of mothers like her. What must their lives be like? She pictures their households, and pictures an easy life. Not easy as in simple, but easy as in normal. Are those mothers blissfully unaware of mothers like her? She reminds herself not to judge her insides by someone else’s outsides (she read that somewhere), but she can’t help but wonder what that normalcy must be like. Not normal in terms of her child being not normal, but normal in terms of just being a typical, average family. She gets lost sometimes in the added layers of complication of their lives; the trying to find the after-school activity that promises the largest chance of success for her child, the hope of her child finding a playmate that might become a real friend.

     She watches mothers, and she reminds herself she wouldn’t change one thing about her child (he is perfect) save the chance to make things easier for him. It’s not that she doesn’t want him to learn the tough lessons, but rather that she wishes he didn’t have to learn so many of them. Where’s the equity? Why do these kids, already challenged, have to be challenged so much more? That’s what makes her cry.

     She watches mothers, with a feeling she can’t quite describe building in her heart. It’s not envy, judgment, anger, self-pity or sadness. It’s distance. She feels on the fringe. She feels like her son.

May 10, 2009 at 12:31 pm 7 comments

The truth is out

     Hi, my name is Darcy and I…like Jenny McCarthy. It’s true. I admit it. From the time Jenny unknowingly entered my radar screen, when I attended a party at her (then) in-laws’ home and saw the autism ribbon magnet on their fridge, I withheld judgment. I wasn’t completely sold until today, but she’s now won me over. My liking her doesn’t mean I want to get rid of vaccines, nor does it mean I no longer trust my son’s doctor.

     My theory on autism, which I find incredibly reasonable, is that there’s a genetic component which is triggered by some assault on the system. (Note the word “triggered” instead of “caused.” There is a difference.) Be it a virus, an overdose of antibiotics, an auto-immune condition, or a toxic build-up that finally tips the scales – I think there’s something. I think it’s likely different for every kid. I have, since the moment we started treating C’s medical issues instead of his autism, believed there is a medical component that goes with his diagnosis. When C’s body feels better, he functions better and he’s happier.     

     Jenny feels as though vaccines triggered (or perhaps caused, I’m not sure about her semantics) her son’s autism, and I truly believe that happens in some kids. Our experience was different as C fit his diagnosis at birth. There was no regression in our house. Yet I wish I’d asked more questions, slowed down a bit and read more in those first years. I would’ve still vaccinated, but I would’ve done it in a more reasonable way. I would’ve ordered a thimerosal-free flu shot when C had his doctor-ordered flu shots at 6 months and 18 months. Because truth be told, while I don’t think vaccines triggered C’s autism, I don’t think they helped much either.

     As I listened to Jenny talk today on “The Doctors,” which I only caught by accident, I was struck by how reasonable she sounded. I didn’t see a raving lunatic anywhere on that stage (except, perhaps, for the doctor that threw what we call in our household, a “fit”). All I saw was a Mom sharing things such as the GF/CF diet and supplements that helped her child (much of which also helped mine), complete with a cautionary tale about blindly following doctor’s orders without question. I find it difficult to find fault with that.

May 7, 2009 at 9:39 am 8 comments

It’s all autism, all the time.

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