Wednesday, October 28, 2009

Take a Peek Through Our Window

This morning I was up in my bathroom, brushing my teeth. I looked around my bedroom and thought to myself, "I've got a kick-ass bedroom". We've got the master bedroom of the house and it really is awesome. It's huge and takes up the whole depth of the house. It's blue.. a dusty blue that I love. We've got the most comfy king size bed that hubby invested in last year after our sleeping in a smaller creaky mattress that we'd had for 15 years. We've got cable tv on a decent sized tv (but I'd appreciate it if someone would buy a remote for it) and we've got a massive walk-in his and her closet. A huge bathroom with his and her sinks, a soaker tub, decent shower and even a built-in separate toilet with a door so I can brush my teeth without seeing hubby reading his sports mag on the throne. I even have the best chaise longue that sits in my window.

So why am I bragging about my bedroom? There's a flip-side to all of this. I NEVER GET TO USE IT! This isn't going to turn into an x-rated post, don't worry. I just realized how many little things make my life different than the lives of my friends and while brushing my teeth, I had a new reminder.

- I spend no time in my bedroom or anywhere upstairs, unless I'm cleaning, because I need to shadow the twins at all times. I can't shower unless the kids are asleep, in case they roam the house, break into the cupboards, or make a run for it. We have to sleep with the bedroom door (and one ear) open throughout the night in case Will decides to take a run to the river. In other words, it's like living in the newborn stage six and a half years later.

- we had to install a security alarm system in our home, not to prevent burglars from coming IN, but to keep Will from running out. I can't remember if I've blogged about it before or not, but we have gone through some pretty terrifying experiences with our little runaway. One time Will woke up before the rest of us and left the house in his pyjamas, running all the way to the Bow River (it isn't a teeny stream, either).

Fortunately some guys cycling on their way to work caught him before he got in. Another time, he ran away right under our noses and this time he made it IN the river. A stranger walking by happened to see him go in and he jumped in afterwards. So scary. Hence the alarm that now goes off everytime the exterior doors AND Will's bedroom door is opened or closed.

- I have a child who hasn't eaten solid food in two years. Prior to that, Owen's foods were self-limited already to just a handful of different items. But since all foods stopped, he has been on a special, gluten-casein free meal supplement drink. It doesn't come cheap. Neither do his diapers and pull-ups and wipes. It's an expensive thing, having kids. But I do realize I'm preaching to the choir here... sorry..

- There are things that I think many other families take for granted. It can definitely be a struggle to pack up the kids and go grab groceries. It can be embarrassing if your kid cries in a store. But when you've got twins who are both too big to put in the cart and who both take off and bolt in opposite directions, shopping is not an option. Owen and Will are both hyper-sensitive to loud noises and we can't pinpoint what acoustic environments can send them into a melt-down tantrum. Owen drops to the floor into a turtle position, shoulders up and arms covering his head and specifically, his ears.

OR he does the opposite; screams and cries and crumples to the floor in dead weight. If Owen drops to the floor, Murphy's Law can guarantee that Will will likely take this opportunity to bolt. Trips to the grocery store are not an embarrassing inconvenience, but a safety concern. I remember an occasion where hubby was out of town and it was in the heat of the summer. The kids were practically living in the backyard, so they could escape the heat and play on the waterslide that we had set up. The city was doing some cable work in our backyard and had upset several wasps' nests. I am allergic and was unaware if the boys had inherited my allergy, so was obviously in a panic. I was desperate to get to the store to buy some wasp killer, but knew I couldn't go with the twins. It was the most frustrating feeling to know that I couldn't run a simple errand. This little rant didn't even include the fact that Owen refuses to set foot in a public washroom (this one many of us can relate to as well, I'm sure). Really limits the length of time we can be out in public if we can't use the bathroom.

- Will's OCD can drive a family crazy. When Willy's going through a phase of high anxiety and sometimes this can last for months, his Obsessive Compulsive Disorder can get out of control. He can be playing in the other side of the house and hear the television or radio turn on and he'll sprint through the house to scream for it to be turned off. If he hears you say the word "to/too/two" he will run and plant himself in your face and insist that you repeat the word back to him. Again. and Again. and Again. and Again... If you turn the lights off, he wants them off. If you throw his comforter across his bed, he wants it left folded a specific way on the footrest. He refuses to get out of the tub until the last drop of water has gone down the drain. He won't let you wear short-sleeved shirts in winter, because he'll tug at the sleeves to pull them down to your wrists. If you typically wear your hair down, he'll try to pull out your hair elastic to make it right. He carries around armfuls of stuffed animals and if they are wearing t-shirts he brings them to you to take them off.

Then put them on. Then take them off. Then put them on. Then off... Any effort made to stop the behaviour in its tracks or not fulfill his irrational request will guarantee a tantrum that will not stop or disappear. Will can be put to bed after one of these episodes and wake up at 4am, immediately searching for the stuffie's t-shirt, or standing above your bed asking you to say the word "two". He doesn't forget.

- Owen's latest stim: ripping and eating paper. His target: every dvd and cd insert he can get his hands on and every book or photograph he can find. This has meant that my library room has become Owen's favourite place to be. You can shadow a six and a half year old as much as possible, but they always find a way to evade you. The result is the destruction of at least 60 of my books and countless photographs. I can't begin to tell you how devastating this is to me, but I am certainly grateful for digital photography. I'm not even mentioning the damage he has done to Jake's room and his bookshelves. It's difficult as the grown-up to not get angry at the situation, but how can you expect an eight year old to be understanding when his brother has destroyed his dvd's and books.

For the record, we are continuously working on teaching the boys the skills they need to tackle each of these issues. But this is just a taste of the extraordinary little quirks that you'll be witness to if you look in our window. I don't tell you this to whine, as much as to explain why we might be a little more harried than the average parent, or unable to come to the phone, or broke because of the extraordinary expenses, or on edge because we're exhausted from the constant battle, or we have no drink to offer a guest because we couldn't get to the store. Have a little compassion for the people around you, because you never know what's going on behind the curtains unless you peek through their windows.


otin said...

I have nothing to say except that you are truly amazing and it must kill you to hear people complain about silly things like having to get up early or their days at work!

Anonymous said...

Wow. This is a huge eye opener. I can't imagine. You must be exhausted every minute of every day.


Menopausal New Mom said...

That was one of the most eye-opening and powerful posts I have ever read! I am so happy that you found me so I could follow you.

You are one amazing woman who soooooo deserves that wonderful bedroom you described.

I hope you are able to find the support that you must need when things get hectic and out of control, I hope the blogging helps. It has certainly helped me cope with the shock of finding out I was in menopause 2 years after having my first child while I was still hoping to have one more.

I salute you! You are one amazing woman!!

I'm hooked on your blog and when I get a minute which may take a week or two, I'll be reading through your older posts.

Hugs to you

Jennie said...

The thing that REALLY shocks me, is that you're not more harried & crazy than parents of kids with less challenges. You still find time (make time) to read, write amazing blogs, discover new music & think interesting thoughts. You Blow my mind Stace. xo

Aunt Juicebox said...

I'm glad you wrote this. Every sentence had me more and more in awe over what your daily life must be like. It also makes me even angrier at the people I know who can't even take care of one kid who doesn't have any problems. If they only knew.

Nezzy said...

You are an amazing loving mother whom I take my hat off to. In our Special Ed. class I've dealt with many autistic children but they left me at 3:00 and went home. Then I went home to my bedroom.

I just want you to know the last autistic child I had is now in his second year of college on the honor roll. Hang in there girl. I hope you have surrounded yourself with a good support system.

I pray that God blesses you in a most special way!!!

kys said...

I'm embarrassed about all my whining and complaining. You are a wonderful mom!

blueviolet said...

That really was so enlightening. I don't know how you have time to get anything done. I suppose you develop a rhythm of sorts.

It reminds me of a book I'm reading about a boy with extreme OCD behavior. It's for a book tour and I think my post date is in November.

Have you ever considered writing a book yourself to share your experiences, and possibly help out financially?

Dan said...

My sympathies. We have a friend and former business partner who has twins with ADD/Aspergers. She has to run like a mad lady to keep up now that the twins are 8. The twins don't tend to head off, they tend to bring in. The family lives on a goat farm and the twins like to herd the goats into the house. If you've spent much time around goats, you know that isn't good.

This comment has been removed by the author.

I could have written this post and the most important thing I think you wrote here is this:

"There are things that I think many other families take for granted."

Ain't that the freakin' truth??? People with typical children don't understand how autism can creep into every minute detail and aspect of living. They just don't get it. I'm not bashing them for it. After all, how could they possibly understand when they don't live this every moment of every day?

Wednesday, I did actually venture out to the grocery with both children - something I never do. At one point, we were going along and my son was making a big fat deal over nearly nothing (a single drop of water on his pants). People were staring, the whole bit, everything I'm sure you're used to....well, this one guy comes along and says, "That's about like my six-year-old." Now granted, I should NOT have said what I said next, but I said, "Well, he's autistic. So we get everything times ten."

And he said....wait for it....wait for it....."It's not that different, you know."



Really???????? Are you kidding me?

I didn't say anything back to him but I wanted to skin him and it made me cranky the entire rest of our shopping trip.

Anyway.....hugs to you! And there are MANY of us out there who "get" it so don't ever feel bad when you have to let loose on here.

June Freaking Cleaver said...

My son, now 14, does not run off...but he insults people in the store, and sometimes has a meltdown if he doesn't get something he likes.

And when he had a major outburst at school, he was arrested for assault.

At home, he eats everything he can get his hands on - gets up in the middle of the night to consume food we'd not let him have in the light of day.

We have less things to worry about - it's just that now, the problems tend to be filled with serious consequences.

I often describe parenting him as having a 14 year old toddler.

We moms (even those with typical kids) need to support each other.

Vent away.


I didn't come on here with my first comment just to give my sympathies and tell a personally related story, I came on here to ask if you have checked into Project Lifesaver.....but I forgot and then things got nuts around here last night (as they ALWAYS are!) and I couldn't get back on here.

Anyway, if you haven't already, you might check into seeing if Project Lifesafer is in your area of the country yet. It is a program that gives families with wondering children/adults trackable bracelets.

The program usually works through fire departments but is sometimes run through police departments. Their website is
If they are not yet in your area, it may be worth contacting the officials in your area to get this program started locally.

Good luck! I know what it's like to have a child (and now maybe two, because DD is doing it too!) who runs off in public places.

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