Thursday, July 30, 2009


I figured it out.

Not that average three-year-olds aren't exhausting in their own right, but a three-year-old with Autism AND Epilepsy has just plain old... [insert your own word to describe just how tired I am. I'm too tired to get a thesaurus to look one up].

I figured it out while I was making beds. I do some of my best thinking while making beds. It's the constant vigilance that makes you feel like you've gone off the deep end.

You don't ever, ever let your guard down, or you end up with things like the poopy potty incident (which I care not to discuss), or children being crushed by dressers, or you're stuck figuring out why the in-out mechanism on your DVD player doesn't work.

You can't leave her alone in her bedroom because she stands on the one inch wide headboard to look out the second-story window, and she needs reminding every 15 seconds to get down. You can't unload a dishwasher without her opencloseopencloseopencloseopenclosing the darn thing (or a cupboard, or the fridge, or a closet for that matter). You cannot for an instant let her out of the confines of the fenced back yard lest she run out into the street, heading for the park, and may or may not obey the command to stop. You can't just let her play at the park, watching from a distance, because she'll grab the cute little 2-year-old girl by the scruff of the neck and try to hurt her.

By the end of the day, you're exhausted. So much effort goes into what ABA refers to as "shaping" her behaviour, prompting her for appropriate responses and modeling them. And prompting. And modeling. And reminding.

Before you know it, it's 8 p.m. and you've just reminded her for the 25th time that day to stop banging her head on the plate glass window in the living room (and try redirecting her somewhere else without resorting to Raffi, again), your house is a mess because you can't keep up with both her and the toys/dishes/laundry/animal hair through the day, and the baby accidently took a nap at 7 p.m. when you weren't paying attention so now she's up until 11 o'clock, easy.

But then you finally get down time, of some sort, where you're not hovering over that blonde, curly-headed mop trying to "shape" appropriate behaviour and generally try to keep her from hurting herself, others and your property.

The vigilence has seen us through another day.

You finally crash at about midnight, with two loads of laundry still unfolded but at least the dishes got done, and you get a good, solid two hours until Abby starts screaming in a night terror and takes over an hour to come down and settle back to sleep, just in time for the baby demanding to be fed.

So the vigilence, then, really doesn't get to sleep either, now does it?

There's constant medications/supplements (at last count, we use eight medication syrings a day, plus one pill), two-hour waits at the doctor's office with your phobic child for a two minute appointment for a medication refill because he won't write a script for more than a couple months at a time. There's the constant reordering of medication because the compounding only has a two-week shelf life (and the dose is not available in pill form).

Does it sound like I'm complaining? I guess I probably am. But hey, it's my blog, and I'll whine if I want to.

I guess what I'm trying to say is that it's that constant vigilence, the never being able to let down your guard, that I find so trying. I am thankful everyday to God in Heaven that I'm not needing to keep vigil over the seizures, and the vigilence required for the medication regime is an acceptable price for that.

But the behaviours that never seem to change. The having to repeat, repeat, repeat, and feel like I'm getting no where with my child. It's depressing. It's discouraging. It's exhausting.

It would be nice to let my guard down a little bit.

Wednesday, July 29, 2009

The Price of Admission

A friend of mine (okay, I admit, a more virtual friend than a real-live friend, even though we live in the same city!) got her diagnosis today. Her son has Aspergers. I want to do the happy dance, because it's been a long, hard road for them struggling to get help for their now four-year-old son.

A diagnosis is a funny thing when you have a children who's different: in a sense, it is a small victory.

You have a name.

You have something to Google.

You have confirmation that you are not crazy, you are not a bad parent, and that this is not a figment of your imagination.

And most importantly, you have a piece of paper that lets you access services to better your, your child's and your family's life.

It's also the price of admission to a very prestigious club. The Mommies Club.

First I belonged to the IS Mommies Club. Then I joined the ASD Mommies Club.

The members are great. I love the people in these clubs. I especially love the kids that bought our admission to the club.

I wanted to say that as far as clubs go, they suck. But deep in my heart, I know that's not true. However, the price of admission is steep. I would rather be in the I'm-the-parent-of-a-delightfully-average-child club. You know, the worse-thing-I-have-to-worry-about-is-... well, I don't really know what parents of average children worry about. But the dues seem somehow more manageable.

But there are great perks to this club. You get to know some very interesting people. Granted, many of them are medical professionals, but interesting nonetheless.

And you learn! You get a great education about a wide range of topics, including anti-seizure medications, EEG's, seizure management, first aid, child development, and language acquisition. You learn compassion, creativity and perserverence in a unique and powerful way. You learn to use your voice and your words and your actions to advocate for your child, your cause and your family. But you learn, even more importantly, how to find the joy and peace in the still and quiet, and to relish the good moments however fleeting they sometimes seem to be.

In short, it makes you a Super Parent. You have to be. There's no doing it half-way, half-assed or half otherwise when you're in the club.

And best part of all? You discover that





That alone is worth the price of admission.

Wednesday, July 1, 2009

Kamping With Kiddies 101

We survived. I can't believe we took the girls camping, survived and actually enjoyed it.

We told ourselves that things didn't need to be perfect, and that this little excursion was a learning experience on everyone's part. While Michael and I used to camp a lot before we had kids, we have never (successfully) attempted to do so since Abby was born.

A lot of stuff we did were firsts for Rachael, such as going to the beach, but she had tons of fun. We really pushed Abby out of her comfort zone the past couple of days, but in the end she did great. The walks to the park, the beach and the Raffi CD's on her own personal discman helped a lot. We even had pretty good nights, even after the raccoons visited us at 2 a.m. and the howling coyotes at 3.

We took away some valuable lessons from this experience:

1. Wear slip on shoes. Laces, tent zippers and trying to carry a squirmy baby is not a good combination.

2. Don't try to apply sunscreen to your own back. You will miss large swaths of tender, white flesh. Which is now red and incredibly painful.

3. The baby is actually pretty happy being bungee-corded to a camp chair. Go figure.

4. The baby that will eat nothing will eat large fistfuls of sand. Go figure.

5. Three-year-olds have no qualms about eating a potato chip that has been ground into the dirt. Several times over.

6. Bring lots and lots of bug spray.

7. It's pretty funny when you see a dog riding around the campground in a bike trailer that's nicer than the one you put your human children in.

8. Don't go for long walks in the forest with the baby, no flashlight, no whistle and no map at dusk.

9. Don't. Freak. Out. It's. Only. A. Spider.

10. Did I mention that slip-on shoes are of vital importance?

I dutifully took pictures and will post them tomorrow or the day after after I've had some sleep in my own comfy bed.