Archive for April, 2009

The short bus to nowhere

     As I read the story of a seven year old autistic boy in Springfield, Illinois who was assaulted on the bus (the special needs bus, no less!), I am reminded of the constant vigilance we must take to protect our children. It’s stories like these that reinforce the feeling that it will be a cold day in Arizona before I let C ride the bus. Thankfully, for the moment, he not only wants me to take him to school every day, but also wait on the playground until the bell rings and he goes inside. 

     I feel as though I’m protecting him from an invisible enemy that shows up at random and unexpected times. He could probably ride the bus for years without incident, but given that as I type I can still see the scars on my arm from a child who constantly harassed me on the bus as a kid, it’s just not a chance I’m willing to take. While C is capable of and often does speak up for himself, there’s an equal number of times when he inexplicably does not do so. When he suddenly burst into tears over Spring Break saying he wanted to move because a boy at school told C he wanted to kill him, I tried to impart the importance of reporting such incidents to someone, anyone, in real time instead of days or weeks later.

     So am I overprotective? Absolutely. I’m the first to admit it. Yet these very special kids need more protection than most, and if we as parents don’t do it, who will?

April 30, 2009 at 10:36 am 5 comments

Harvard or Yale?

     We are once again on the search for the best possible educational program for C. Third grade feels like a big year for him; in our district, it means moving from the K-2 school to the 3-5 school. The kids are expected to be more independent, parents are less involved, and it’s a big change. Frankly, I’m not sure C is ready for it, on any front.

     As I agonize over the choices we have available, weighing pros and cons and talking to anyone and everyone who might have an opinion, I find myself almost overwhelmed by the ramifications of each particular choice. If C stays in the regular public school will he slip through the cracks next year? If we switch him to the smaller charter school, will his academics suffer? It’s never easy making these choices for C, because “education” means so much more for him than simply the three Rs.

     I made the joke to Husband that I need to remember this isn’t exactly Harvard we’re talking about here – it’s third grade. Elementary school. Basic math and art class, with a little recess and reading thrown in. Yet with one single sentence, Husband reminded me that this is every bit as big as I’m making it out to be. His answer summed up my concern that this is a pivotal year for C by pointing out the obvious. “Every year,” he said, “is a pivotal year for C.”

April 27, 2009 at 9:23 pm 5 comments

Don’t sweat it

     I had a boss once who gave the entire staff copies of the book Don’t Sweat the Small Stuff. Like the good employee I was, I dutifully read the book, enjoyed it a little, and thought about the message it passed along. All these years later, I still remember that book, but now have a completely different perspective on its usefulness.

     The truth is, in this life, with this child, it’s all about the small stuff. We celebrate the little things because in fact they’re such big things, all the while trying to make the big things into little things. We want it all to be little, all of it manageable, all of it do-able.

     If C can’t handle the little things, there’s no way he’s going to tackle the big ones. We break up those big tasks, like tying shoes, into the tiniest possible pieces in order to make them all work together to complete the final picture. We cheer the accomplishments along the way – making a loop, getting the shoestring around the loop, and pulling it through – simply because they are cheer-worthy in and of themselves. We’ll get to double knots later, but at the moment I’m pretty happy if I don’t have to re-tie his shoes altogether.

     It’s now my biggest goal in life to tackle the small stuff, because everything else is built on that.

April 20, 2009 at 5:51 am 5 comments

Walk ten feet in someone else’s shoes

     There’s way too many people who say things about how kids with autism are really just poorly behaved children with terrible parents. For every person who says that publicly, I’ll bet there’s a zillion more who believe it but don’t say it out loud.

     I’m here to say I get it.

     As I stood at kid golf class this afternoon watching C behave just enough like a banshee to warrant some intervention, but not quite enough like a banshee to warrant complete removal from the situation, I understood why people might have the perception that he is only a poorly behaved child with parents who can’t control him.

     In fact, sometimes C is a poorly behaved child with parents who can’t control him. I looked around this afternoon at the parents looking back at me and keenly felt what they were thinking. I almost wished C had a scarlet “A” on the back of his shirt just so everyone else would know. Not to excuse his behavior, but at least to explain it, along with our difficulty in managing it. 

     Ultimately, the lesson ended with my carrying a screaming, writhing child to the car. I made the what-seemed-like-a-mile-but-was-really-only-about-a-twenty-yard-trek to the parking lot, knowing that I was much closer than I’d ever been to talking C through his frustration before the behavior spiralled into a tantrum. I was proud of both of us for that. Yet I’ve operated under the assumption that C will grow out of these tantrums eventually, and I find myself wondering if they’ll stop before I am no longer able to physically relocate him to a safer, calmer place.

     In the meantime, however, I’d like to invite the Michael Savages and Denis Learys of the world over to my house to see if they can do a better job than we do. If they have parenting advice for us, I’m ready to hear it. Bring it on.

April 16, 2009 at 5:22 am 13 comments

The things we do for our kids

     C has gone through a number of obsessions, each one ending about the time those of us around him are about to pull our hair out if we hear about it one more time. A few of those obsessions have been somewhat fun for the rest of us, such as state capitals and the Presidents. But the best one so far has been “Wheel of Fortune.”

     When we first discovered C was hyperlexic, I figured there would come a time when he would enjoy the letter and word game. That time has come. We watch the show, have the Plug ‘N Play video game, and root for the “characters” on the show that we like. I’m more of a “Jeopardy” girl myself, but I’ve come to discover I’m actually pretty good at “Wheel.”

     So it is with great excitement (mostly on C’s part) that I am going to audition for the show this weekend when they visit our city. Yes, I am joining the masses of humanity that will gather in an attempt to make their way onto what is arguably America’s favorite game show. C has already told just about everyone he knows that I’m going (and even a few people he doesn’t), so I can’t back out now. It’s crazy, I know, but C would never forgive me if I passed up this golden opportunity.     

I’ll let you know when I win the big bucks.

April 14, 2009 at 10:58 am 8 comments

Advocacy, my way

     I am a non-confrontational person by nature, but there are times when I realize there is no other route available. Once I found myself proudly and loudly on the opposite side of an argument with a district superintendent about putting an alternative high school in a special needs preschool building. The fact that this man found it so hard to believe why parents of children with special needs would have a problem with that explains more about his character than I ever could.  

     That incident was years ago, and since then I often find myself gravitating toward groups geared toward advocating for special needs kids. I enjoy being part of a group like that, but there are some that bring too much negative energy to the table. I’m becoming more and more wary of the groups with which I affiliate as I don’t want to be aligned with a group that fights the district at every turn. I’m a “kill them with kindness” kind of person who believes in building positive relationships with the people on my son’s team instead of seeing those people as the enemy. And frankly, my experience has been that  these people really care about my kid and will do their best by him. The minute I start feeling that the members of C’s team are not there for him, I know it’s time to leave.     

     More often than not, it’s the other parents who frustrate me more than school staff. When confronted recently by a parent who implied I don’t care what happens to my kid simply because I didn’t want to be part of a dysfunctional group, I blew. Not at her, of course, because I don’t do that, but inside. Not care? Me? Is she crazy? I simply choose my battles wisely, because there’s just way too much to lose.

April 13, 2009 at 5:05 am 3 comments

Monday Mumbers (but it’s Wednesday!?!?)

40 – The number of years I am old. Today. Yee-haw.

400 – The number of years old I feel. Today. Most days.

10 – The number of times C has said to me, in the last week, “Mommy, I’m just going to say you’re 40. You’re almost 40, so I’m just going to say you’re 40.” Seriously, who is this kid talking to about my age that we even need to have this conversation???

14 – The number of supplements I give C, on a rotational basis, carefully calendared so we get the most in him that we can, given that he can tell when we put ANYTHING into ANY food or drink – and then won’t eat or drink it.

2 – The number of days it took for C to go from speaking in rote, echolalic language to back and forth conversations with full sentences after we started said supplements.

5 – The number of schools C has been in since preschool. We’re going on two years in the same district without any major disasters. Amazing.

1 – The number of margaritas I’ve had so far this week. That’s a lot for me. It’s a sign of the times.

7 – The number of years C has been on the gluten free, casein free diet.

1 – The number of years I’ve been on the gluten free, casein free diet.

2 – The number of district budget meetings I’m attending this week.

0 – The number of district budget meetings I want to attend this week.

9 – The number of kids in our little town I know that share C’s same diagnosis.

0 – The number of kids in our little town I know that share C’s same diagnosis and are actually anything like him (or each other, for that matter).

50 (at least) – The number of people I know, in real life, who have kids with autism.

15 zillion – The number of times C has told me today that the $5,000 bill he got at school today is, “Real, it’s totally real. Totally. Real. Totally.”

0 – The number of times I’ve responded to that comment with something other than “Hmmm…” I don’t want to be the one to break his heart.

Googol times googol – The number amount that I love my kid (check it out, it’s a real number).

*** Thanks to Goodmum for the idea.***

April 8, 2009 at 4:44 am 8 comments

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