Holly crap... Swan River, population 4,500. 6 and a half hour drive from Winnipeg. It's not like I can turn around and go home if Dayton throws a fit, ya know what I mean? So before our drive out to visit my best friends Danielle and her husband Lindsay, I ask Dayton to pack a few things he doesn't want to leave behind...
"How do I pack Jack (he's talking about our cat)?"
"We're not taking Jack with us buddy, Dani has 2 cats, and they probably won't like Jack invading their territory."
"How am I going go get to sleep without Jack (Dayton always cuddles up with Jack at bed time)?"
Darn it. Hadn't thought that one through and I need to think fast...
"Take Zeus (a stuffed cat Dayton helped make)...
"He doesn't smell like Jack!"
And then we have a slight melt down. Eventually, Dayton begins packing his things lining up his belongings in the hallway. I ask him to store his belongings under the kitchen table so we don't trip over his things.
I wake up in the morning to a mountain of toys under my table, two of Dayton's blankets, two of his pillows, a blanket and a pillow for me (how thoughtful), and requests for "Danone Crush Yogurt" to take with us in case Swan River doesn't have any... Oh, don't forget about the cheese strings and "Jello" pudding snacks, the "Canadian Rye Bread" and the "Nutella..."
It takes me three trips to the car to get all of Dayton's belongings into the car. Right about this time I'm thinking "in what moment of insanity did I decide a trip to Swan River would be a great idea?" And then I remember I haven't seen Dani since Christmas, and Lindsay for a year and a half!!! Right. It's mommy time, just forgot how much work it takes to get out the door.
About an hour into our drive, and we make it to Portage, and of course I hear "I'm hungry, I'm thirsty." We stop at a Tim Horton's and I very much need a coffee...
Fifteen minutes after leaving the Tim Horton's, I hear "I have to go pee." In another hour I hear "Are we there yet?" And then I get lost. I find my way back on the right highway, and I make it! Hooray!!!
Danielle comes outside and helps me unload the car after giving me a huge hug, which I desperately need after that car ride. Dayton spills out of the car with his Nintendo DSI and I grab as much as I can carry, leaving one of Dayton's boxes of toys in the car, thinking if he really wants it, I'll run back out and get it. Danielle takes as much as she can carry too, looks at me and says "Wow, if I had to pack that much for just a two day visit, I don't think I'd go anywhere..."
She says this in awe of my efforts to make Dayton comfortable. Danielle is the most supportive person I've met in my struggle with Dayton's autism. She's constantly emailing me and facebooking me websites, groups, therapies, information and books on autism. On days when I feel down, I know I can email or call either Danielle or Lindsay, and that I can anticipate them cheerleading for us.
Danielle has started a blog challenging herself to read 101 books in 1001 days. If you love reading, you need to check out her blog at http://101booksin1001days-danielle.blogspot.com/. During one of my visits to her blog, she had posted on reading a book called "House Rules."
Addicted to my Kindle now, I have to download this book, especially since Dani has said that even though the book is fiction, the main character of the book reminds her of my struggles with Dayton and another one of her friends who also has a son diagnosed with ASD.
So while I waited in the evening for Dayton to settle down and go to sleep, I read this book on my Kindle. I have to say, it is a work of fiction, but I did enjoy reading it. It may not have accurately have portraid a person with Asperger's syndrome, I haven't met anyone quite as afflicted as Jacob, the main character, but I can relate to Emma, Jacob's mother. Emma's daily schedules in helping Jacob cope with his disability can be echoed by any parent of a child with ASD. Mustering all her strength and energy, she fights for her son's rights and to "mainstream" Jacob as well as she humanly can. This comes to a great expense not only financially, but in her personal relationships as well, of which she has none...
I can relate to this woman, I really, really can. Emma's description of her battle with Jacob's school sounds all too familiar: "being an advocate for your autistic child's education is a forty-hour-a-week profession in and of itself. All sorts of adaptations had to be argued for and vigilantly monitored: a cool off pass that would allow Jacob to leave a classroom that got too overwhelming for him; a sensory break room; a paraprofessional who could help him, as an elementary school student, put his thoughts into writing; an individualized education plan; a school counselor who didn't roll her eyes every time Jacob had a meltdown." Holly crap! That's me! That's probably most parents with children who have autism in Canada, unless of course you live in Alberta, but perhaps even there? Fiction or not, this part of the book unfortunately rings true for most of us.
Which again makes me ask: "Is inclusion really what's best? I get the theory of inclusion, I really do, but I know for a fact my son is not experiencing "genuine inclusion," you know, the theory kind. What we've experienced is very similar to what Emma (yes, she's a fictional character, I know) has experienced, only Dayton still doesn't have a cool off pass or a sensory room, and he can't read or write... and why is it up to me to educate Dayton's teachers and principal, especially when they don't listen to a word I say because they know what works, and yet call me to "fix it" when their way fails?
Fiction or not, this book seriously struck a note with me. Again, this book is not an autism help book, it is a work of fiction, but some of the book is very much a reality for me, and I'm going to bet for many parents out there. If you have a Kindle, let me know, and once I figure out how to "lend" it to you, I will. Kindle's allow you to "lend" a book to someone for up to two weeks.
Back to my visit with Dani and Lindsay... It was awesome!!! Dayton did super well, without having a meltdown at all!!! He busied himself playing video games while Dani and I yapped. Dani's husband Lindsay joined us a few times, but let the hens fend for themselves for the majority of the time. We ate like there was no tomorrow (well I did at least, putting myself into a pizza comma my last night there). I really liked Swan River's Chicken Chef. Not the chicken, but the pizza.... yum!!!
Dayton and I got to meet Dani's new kitty "Theo." He was adorable and super playful. Really liked chewing on my toes as I slept, but he was just too cute to get mad at.
Dani also informed me that Glen's accusation of my severe snoring like a "Banshee" is very much true. How embarrassing... Oh well. She's my best friend, so she accepts me along with my quirks. Even more important than that, both Lindsay and Dani accept Dayton as he is. As a parent, nothing is more important than that. I'm eternally grateful for their friendship.
Dayton and I gave their daughter a ride back to Winnipeg for Spring Break. The ride home was much, much shorter. Dayton kept his head covered for most of the way home, and it took us 5 hours (Yes, of course there was speeding involved).
Overall, we had a great little break to start off our Spring Break. How about you?
Consider yourselves hugged!