Bedtime Story: The Final Chapter

Summary of parts I and II:

Girl wants a tall bed. Girl gets tall bed. Tall bed dies. Twice. After second death, girl buys flatpack bed from IKEA, thinking it's the right size. 'Tisn't. Girl is still left sleeping on a mattress on the floor.

And now, what we've all been waiting for: The Final Chapter.

So the girl is getting really tired of sleeping on the floor. Her knees have mysteriously taken a leave of good health which makes entering and vacating the bed a less than graceful operation.

So she searches.

And she plans.

And she draws poorly drawn plans, because she hasn't a visually artistic bone in her body.

And she talks shop with her father, which was very exciting and very nervous-making. Every time she had a plan for building something, she would ask her father for help, and he would end up taking the entire project out of her hands. But not this time! This time he helped edit the plans, and he provided helpful tools.

Finally the girl decides "This is the day!" She draws yet another plan (for all the other drawings disappeared) and takes last minute measurements and off she goes to the hardware store! Pine! Carriage bolts! Nuts! Washers! Drill bit! Candy bar!

As she's watching the helpful hardware store employee cutting the boards, she feels a moment of horror. What if it doesn't fit in my car? Thankfully, it did. With a whole three inches to spare.



She totes the lumber into her house and begins work! After much cursing and swearing and candy bar-munching and a few extra holes here and there, the girl has a bed!


(I am terribly embarrassed by how fuzzy this pic is. Took it on my phone to send to my dad, then sent it to facebook, only to realise it's fuzzier than a bunny. Oh well.)

And the best news is that it holds the weight of the mattress. And the weight of the girl. And a boy child. And two rats. And no wibbles or wobbles. Sturdy as a rock. Needless to say, the girl was (and still is!) very proud of herself.

Bedtime story

Once upon a time a girl wanted a bed. Not just any bed. A bed that she could store stuff under. Or build forts under. And so, her dad built her one. An amazing four poster bed with plenty of crawl space beneath. The girl loved her bed, except that it wobbled to and fro. When she leaned on the foot of the bed, it would move an alarming amount. This wobbling to and fro eventually led to the destruction of the bed's metal parts.

"But do not be alarmed, child; I will fix it. I have new steel hangers that are indestructible," said her father.

So her father came to visit. He took the broken, flimsy hangers off the bed parts, and put on the new indestructible parts. It was not easy. They did not want to fit. "Ah, but this is good," thought the girl, "for if they are this tight putting together, my bed will no longer wobble to and fro!" And much cursing and hammer pounding and more cursing later, the girl's bed was as good as new. Better than new, for now it had indestructible parts. And lots of screws to help steady it even more.

After five months of having the bed against wall A, the girl decided she wanted the bed to be against wall B. She pulled and tugged and huffed and puffed and cursed and spat, but the bed would not budge! "No problem," said she, "I'll just take off the mattress. Sure then it will move!" So she easily slid the mattress off the bed, only nearly knocking a shadow box from the wall.

"But what is this strange button?" she asked, finding a black circular peg thingy. Looking closer, she sees that it's the peg from one of the hangers. One of the indestructible hangers. Looking even closer, she sees that both the tabs for the hanger is missing! "Noooo!"

Instead of further defying a sure death from sleeping on a broken bed, the girl decided to dismantle the bed. But, alas! As she was removing all of those extra steadying screws, two strip! And another broke off at the head. She looked and searched for something to help, but nothing she found could.

Of she went, on her quest to remove the screws from the bed. First to one store, where an employee handed her something saying, "This will work!" Back home went she, only to find out that the employee must have been the villagestore idiot, because there was no way that tool would work, since it was designed for a specific type of screw. So she returned the failed merchandise and searched out another store. Here, they sold her a tool that she was sure would work. So she got home and tried it... Only to find out that she's not quite smart enough to make it work.

Eventually, after much man-handling and more cursing and spitting, huffing and puffing, and pulling and tugging, the girl managed to get the boards free from the defective screws.

And from that moment, she decided that that bed would never enter her home again. And she lived happily ever after, even if she was relegated to sleeping on a mattress on the floor like some teenager.

Speech stuff

Next week I'm taking Camden to COMO for a dr's appointment with a developmental pediatrician, where he'll be screened by a number of therapists/specialists (speech, occupational, physical, and so on). He's been diagnosed with apraxia, which is a neurological expressive speech disorder. With this appointment, I was really hoping to get him tested for food intolerances/sensitivities so we could determine whether or not a change of diet could be useful. Unfortunately, when I called today to see if I could set that up, they said that they would have to refer us to an allergist. Which is just as well, since I wouldn't be able to try a GF/CF diet until May, when I'm out of school and have time to prepare all his meals (including those he eats at school, since his school meals are almost entirely based off of grains and dairy). Anyway, despite the fact that they won't be able to test him for that, I will hopefully be getting more strategies and ideas to work with/pass along to his speech therapists here in KV.

I didn't know that living with his apraxia would be such hard work. I didn't realise that it would involve a lot of translation (I feel bad leaving him with people who don't know him, because he's just so hard to understand, and he gets frustrated and the person he's with gets frustrated). I didn't think he would have to fight so hard to make a sound that is easy for most people (thinking /k/ and /g/ here). I didn't think that I would be driven to tears multiple times a week, simply because I can't understand something that he's wanting to tell me. I didn't know that I would want to punch people (okay, certain person--unnamed) for telling me that he's not doing it because he's lazy (the apraxia dx was a huge in your face). I didn't realise how frustrating it would be to have to drill the same idea over and over and over every day, several times a day.

Of course, I also didn't know how my heart would soar with happiness and pride when he automatically uses the right word (saying I want instead of me want for example) or puts the right sounds together for the word that he wants. Or when his speech therapists tell me that he's their favourite patient. I didn't know that he would work so hard to be understood, by repeating what he says, trying to enunciate, saying it a different way, gesturing, etc.

We are far from the end of our journey with apraxia, but every day Camden makes improvement. He says I with increasing frequency, though not nearly as often as we would like. A year ago, he couldn't tell a story. He can now tell a short story about his day. A year ago, he used 1, 2 and 3 word sentences almost exclusively. Now his sentences can reach up to 6 or 7 or 8 words long, though he still uses a lot of shorter sentences. He does a lot more creative and imagination play now than he used to (though that might just be part of growing up/normal development?).

He makes my heart sing every day that I know him, and every day that I know him I love him more.

A story (not mine, obviously):

WELCOME TO HOLLAND


I am often asked to describe the experience of raising a child with a disability
- to try to help people who have not shared that unique experience to understand
it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip -
to Italy. You buy a bunch of guide books and make your wonderful plans. The
Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some
handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags
and off you go. Several hours later, the plane lands. The stewardess comes in
and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm
supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and
there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting,
filthy place, full of pestilence, famine and disease. It's just a different
place.

So you must go out and buy new guide books. And you must learn a whole new
language. And you will meet a whole new group of people you would never have
met.

It's just a different place. It's slower-paced than Italy, less flashy than
Italy. But after you've been there for a while and you catch your breath, you
look around.... and you begin to notice that Holland has windmills....and
Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all
bragging about what a wonderful time they had there. And for the rest of your
life, you will say "Yes, that's where I was supposed to go. That's what I had
planned."

And the pain of that will never, ever, ever, ever go away... because the loss of
that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy,
you may never be free to enjoy the very special, the very lovely things ...
about Holland.

by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

Seven days without (completed!)

I made it! I've not had one drink of soda since Wednesday 24 February. Nine whole days. And what a journey.

It took almost twenty-four hours for the high levels of caffeine and sugar to wear off, as I said last week, with my severe headache and tiredness. It took a few days before my every second cravings of "Oh, gods, I NEED a Mt. Dew" wore off. And another day or two before I stopped counting down the seconds until I was finally free of my pledge. Yesterday I went into the grocery store to get some apple slices for breakfast, walked right past the soda coolers, and made it out to my car before I realised that I didn't once pine for a Mountain Dew while I was in the store.

Even today, right now, a few hours away from my first soda in nine days... I am surprisingly unexcited. I look forward to it, but if it didn't happen, that'd be okay, too. I think I'm going to try giving up soda on a daily basis. I've already proved I can do without it; however, I don't think there's anything horribly wrong with having a soda from time to time. My goal was never to give up soda completely, but to bring back the pleasure I found in it. At this moment, with my some-what-unexcitement with being able to drink soda again, I'm not sure how well I succeeded in that goal. Have I gone from love/addiction to disinterest? In nine days?