Ever have fate put you back in your place? You are doing your thing, moving and grooving and livin' life, and all of a sudden, something comes out and reminds you who you really are. Your ass is kicked back down the little ladder you were climbing, and you are back in your place, where you really belong.
I hate when that happens. I don't need the reminders, Karma, thank you very much. I am very much aware of my short comings. I know my faults, and my problems. Once in a while, I would like to forget them. Not just forget, but maybe believe, a little bit, that they aren't there. That I am better, or getting there.
Thanks for letting me know that I'm not. Thanks for the reminder.
You fucking bitch.
Rosie N. Grey
The N stands for "nads". As in "kick to the...".
Sunday, November 28, 2010
Friday, November 26, 2010
I didn't write this...but I wish I had...
Tips for relatives and hosts of holiday gatherings who might need a
crash course in what to expect from their guest(s) with Autism.
Autism and Holiday Gatherings ~ Viki Gayhardt
Dear Family and Friends:
I understand that we will be visiting each other for the holidays
this year! Sometimes these visits can be very hard for me, but here
is some information that might help our visit to be more successful.
As you probably know, I am challenged by a hidden disability called
autism or what some people refer to as a pervasive developmental
disorder (PDD).
Autism/PDD is a neurodevelopmental disorder which makes it hard for
me to understand the environment around me. I have barriers in my
brain that you can't see but which make it difficult for me to adapt
to my surroundings.
Sometimes I may seem rude and abrupt, but it is only because I have
to try so hard to understand people and at the same time, make myself
understood. People with autism have different abilities: some may not
speak, some write beautiful poetry. Others are whizzes in math
(Albert Einstein was thought to be autistic), or have difficulty
making friends. We are all different and need various degrees of
support.
Sometimes when I am touched unexpectedly, it might feel painful and
make me want to run away. I get easily frustrated, too. Being with
lots of other people is like standing next to a moving freight train
and trying to decide how and when to jump aboard. I feel frightened
and confused a lot of the time, like you would if you landed on an
alien planet and didn't understand how the inhabitants communicated.
This is why I need to have things the same as much as possible. Once
I learn how things happen, I can get by ok. But if something,
anything changes, then I have to relearn the situation all over
again! It is very hard.
When you try to talk to me, I often can't understand what you say
because there is a lot of distraction around. I have to concentrate
very hard to hear and understand one thing at a time. You might think
I am ignoring you--I am not. Rather, I am hearing everything and not
knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different
people, places and things going on that are out of my ordinary realm.
This may be fun and adventurous for most people, but for me, it's
very hard work and can be extremely stressful.
I often have to get away from all the commotion to calm down. It
would be great if you had a private place set up to where I could
retreat.
If I cannot sit at the meal table, do not think I am misbehaved or
that my parents have no control over me. Sitting in one place for
even 5 minutes is often impossible for me. I feel so antsy and
overwhelmed by all the smells, sounds, and people--I just have to get
up and move about. Please don't hold up your meal for me--go on
without me and my parents will handle the situation the best way they
know.
Eating in general is hard for me. If you understand that autism is a
sensory processing disorder, it's no wonder eating is a problem!
Think of all the senses involved with eating: sight, smell, taste,
touch AND all the complicated mechanics that are involved with
chewing and swallowing that a lot of people with autism have trouble
with. I am not being picky -- I literally cannot eat certain food as
my sensory system and/or oral motor coordination are impaired.
Don't be disappointed if mommy hasn't dressed me in starch and bows.
It's because she knows how much stiff and frilly clothes can drive me
buggy! I have to feel comfortable in my clothes or I will just be
miserable! Temple Grandin, a very smart adult with autism, has taught
people that when she had to wear stiff petticoats as a child, she
felt like her skin was being rubbed with sandpaper. I often feel the
same way in dressy clothes.
When I go to someone else's house, I may appear bossy and
controlling. In a sense, I am being controlling because that is how I
try to fit into the world around me (which is so hard to figure out!)
Things have to be done in a way I am familiar with or else I might
get confused and frustrated. It doesn't mean you have to change the
way you are doing things -- just please be patient with me and
understanding of how I have to cope...mom and dad have no control
over how my autism makes me feel inside.
People with autism often have little things that they do to help
themselves feel more comfortable. The grown ups call it "self
regulation," or "stimming'. I might rock, hum, flick my fingers in my
face, flap my arms or any number of different things. I am not trying
to be disruptive or weird. Again, I am doing what I have to do for my
brain to adapt to your world.
Sometimes I cannot stop myself from talking, singing, or partaking in
an activity. The grown ups call this "perseverating" which is kind of
like self-regulation or stimming. I do this only because I have found
something to occupy myself that makes me feel comfortable, and I
don't want to come out of that comfortable place and join your hard-
to-figure-out-world. Perseverative behaviors are good to a certain
degree because they help me calm down.
Please be respectful to my mom and dad if they let me "stim" for a
while as they know me best and what helps to calm me. Remember that
my mom and dad have to watch me much more closely than the average
child. This is for my own safety, preservation of your possessions,
and to facilitate my integration with you tippies (what we autistics
fondly call you neurotypical folk!) It hurts my parents' feelings to
be criticized for being over-protective or condemned for not watching
me close enough. They are human and have been given an assignment
intended for saints. My parents are good people and need your
support.
Holidays are filled with sights, sounds, and smells. The average
household is turned into a busy, frantic, festive place. Remember
that this may be fun for you tippies but it's very hard work for me
to conform. If I fall apart or act out in a way that you consider
socially inappropriate, please remember that I don't possess the
neurological system that is required to follow tippy rules.
I am a unique person--an interesting person. I will find my place at
this celebration that is comfortable for us all as long as you'll try
to view the world through my eyes!
crash course in what to expect from their guest(s) with Autism.
Autism and Holiday Gatherings ~ Viki Gayhardt
Dear Family and Friends:
I understand that we will be visiting each other for the holidays
this year! Sometimes these visits can be very hard for me, but here
is some information that might help our visit to be more successful.
As you probably know, I am challenged by a hidden disability called
autism or what some people refer to as a pervasive developmental
disorder (PDD).
Autism/PDD is a neurodevelopmental disorder which makes it hard for
me to understand the environment around me. I have barriers in my
brain that you can't see but which make it difficult for me to adapt
to my surroundings.
Sometimes I may seem rude and abrupt, but it is only because I have
to try so hard to understand people and at the same time, make myself
understood. People with autism have different abilities: some may not
speak, some write beautiful poetry. Others are whizzes in math
(Albert Einstein was thought to be autistic), or have difficulty
making friends. We are all different and need various degrees of
support.
Sometimes when I am touched unexpectedly, it might feel painful and
make me want to run away. I get easily frustrated, too. Being with
lots of other people is like standing next to a moving freight train
and trying to decide how and when to jump aboard. I feel frightened
and confused a lot of the time, like you would if you landed on an
alien planet and didn't understand how the inhabitants communicated.
This is why I need to have things the same as much as possible. Once
I learn how things happen, I can get by ok. But if something,
anything changes, then I have to relearn the situation all over
again! It is very hard.
When you try to talk to me, I often can't understand what you say
because there is a lot of distraction around. I have to concentrate
very hard to hear and understand one thing at a time. You might think
I am ignoring you--I am not. Rather, I am hearing everything and not
knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different
people, places and things going on that are out of my ordinary realm.
This may be fun and adventurous for most people, but for me, it's
very hard work and can be extremely stressful.
I often have to get away from all the commotion to calm down. It
would be great if you had a private place set up to where I could
retreat.
If I cannot sit at the meal table, do not think I am misbehaved or
that my parents have no control over me. Sitting in one place for
even 5 minutes is often impossible for me. I feel so antsy and
overwhelmed by all the smells, sounds, and people--I just have to get
up and move about. Please don't hold up your meal for me--go on
without me and my parents will handle the situation the best way they
know.
Eating in general is hard for me. If you understand that autism is a
sensory processing disorder, it's no wonder eating is a problem!
Think of all the senses involved with eating: sight, smell, taste,
touch AND all the complicated mechanics that are involved with
chewing and swallowing that a lot of people with autism have trouble
with. I am not being picky -- I literally cannot eat certain food as
my sensory system and/or oral motor coordination are impaired.
Don't be disappointed if mommy hasn't dressed me in starch and bows.
It's because she knows how much stiff and frilly clothes can drive me
buggy! I have to feel comfortable in my clothes or I will just be
miserable! Temple Grandin, a very smart adult with autism, has taught
people that when she had to wear stiff petticoats as a child, she
felt like her skin was being rubbed with sandpaper. I often feel the
same way in dressy clothes.
When I go to someone else's house, I may appear bossy and
controlling. In a sense, I am being controlling because that is how I
try to fit into the world around me (which is so hard to figure out!)
Things have to be done in a way I am familiar with or else I might
get confused and frustrated. It doesn't mean you have to change the
way you are doing things -- just please be patient with me and
understanding of how I have to cope...mom and dad have no control
over how my autism makes me feel inside.
People with autism often have little things that they do to help
themselves feel more comfortable. The grown ups call it "self
regulation," or "stimming'. I might rock, hum, flick my fingers in my
face, flap my arms or any number of different things. I am not trying
to be disruptive or weird. Again, I am doing what I have to do for my
brain to adapt to your world.
Sometimes I cannot stop myself from talking, singing, or partaking in
an activity. The grown ups call this "perseverating" which is kind of
like self-regulation or stimming. I do this only because I have found
something to occupy myself that makes me feel comfortable, and I
don't want to come out of that comfortable place and join your hard-
to-figure-out-world. Perseverative behaviors are good to a certain
degree because they help me calm down.
Please be respectful to my mom and dad if they let me "stim" for a
while as they know me best and what helps to calm me. Remember that
my mom and dad have to watch me much more closely than the average
child. This is for my own safety, preservation of your possessions,
and to facilitate my integration with you tippies (what we autistics
fondly call you neurotypical folk!) It hurts my parents' feelings to
be criticized for being over-protective or condemned for not watching
me close enough. They are human and have been given an assignment
intended for saints. My parents are good people and need your
support.
Holidays are filled with sights, sounds, and smells. The average
household is turned into a busy, frantic, festive place. Remember
that this may be fun for you tippies but it's very hard work for me
to conform. If I fall apart or act out in a way that you consider
socially inappropriate, please remember that I don't possess the
neurological system that is required to follow tippy rules.
I am a unique person--an interesting person. I will find my place at
this celebration that is comfortable for us all as long as you'll try
to view the world through my eyes!
Thursday, November 25, 2010
I have needs, damnit!
I have been feeling needful lately. I don't know what it is. It happens, from time to time. This ache in my heart and my gut and my head. Something is missing in my life, or at least, there is something I need to think about and come to terms with.
I can usually pin it down to something specific fairly quickly. Before Sawyer came, it was that hollow ache under my heart, every time I saw a pregnant woman, or heard a baby laugh. Before I got Axle, it was looking at the Humane Society pages, and trying to imagine each dog and how they would look in my home.
I have had other aches too, but some are too personal and I won't get into them here. No, not that, you dirty pervs. Gross.
But now, I am just "needing" in general. I feel restless, but tired. My mind races a mile a minute, but I can't concentrate or focus on anything. I am generally happy, but I feel drained like I do after a big cry. I wish I knew what was going on.
I went to a baby shower on Sunday. It was wonderful seeing all the little clothes, and toys and baby stuff. Carrie and I were talking, and she agreed that seeing that stuff would send her into thinking about babies again. I thought about that too. I don't think that's it. Think. But maybe. I know Geoff doesn't want anymore, and really, we are perfectly a-ok, 100% good as we are. But what if....what if.....
But I don't think that's it.
There is a beautiful dog on the Niagara Falls Humane Society's site up for adoption. Her name is Gemma. It's a sign, I think. Gemma is one of my favorite characters on Sons of Anarchy. And when Val and I were talking about the show, she remarked how much she liked the name. She said "your next baby needs to be named Gemma". I agreed. Now I am wondering if that baby needs to be a furry one. But I hesitate. Axle is so good, and so amazing with the kids. Geoff raised a good point- am I willing to roll the dice and gamble that we get another dog as good as he is? Or did we make him good through our love and my training? (yeah right!) Hmmmm...I am hesitant....
Acquaintances of ours have just experienced a big move. She got a job in Iqaluit, Nunavut. Yeah, waaaaaay up north. I am not ashamed to say..I am reeking of jealousy. I used to dream of going north. Back then, it was the Yukon. That's originally why I went to school for Fish and Wildlife Technology. I was fucking out of here. I wanted wild. I watch "Into the Wild" and read the book and it speaks to me, so deeply.
Now, I know, it's never going to happen for me. Any moves I make, I have to take my family into account. Sebastian needs very specialized support, and that HAS to be my number 1 priority. But I still dream- literally. I dreamt a couple of weeks ago (and I am sure it was reading the blogs of the couple that was moving that prompted me to dream it) about living in a little log cabin. Of shotguns, horses and dogs. Of pine trees, and biting cold, and fishing lines. I woke up with my hand over my eyes, and tears on my cheeks. What might have been, I guess.
I have been running. Running and running and getting no where. I am not dropping any weight, not really. I am trying to be consistent, but it's hard. To run in the morning, I have to be up at 5am. To run at night means I am up until 1am. And now that it's cold and wet, it is so hard to be motivated. Especially when the results just aren't there. But I keep trying. I see people, people that look and act and dress the way I want to be...and I try. But there are the needs..way deep down...one tells me to keep going. The other tells me I need to give up. So hard.
So, what do I need? I don't know. I will keep soul searching, and looking for the signs I believe in, to help direct my way. For now, Sawyer is crying in her sleep, and she needs me.
That'll do.
Rosie N. Grey
The N stands for "needs".
I can usually pin it down to something specific fairly quickly. Before Sawyer came, it was that hollow ache under my heart, every time I saw a pregnant woman, or heard a baby laugh. Before I got Axle, it was looking at the Humane Society pages, and trying to imagine each dog and how they would look in my home.
I have had other aches too, but some are too personal and I won't get into them here. No, not that, you dirty pervs. Gross.
But now, I am just "needing" in general. I feel restless, but tired. My mind races a mile a minute, but I can't concentrate or focus on anything. I am generally happy, but I feel drained like I do after a big cry. I wish I knew what was going on.
I went to a baby shower on Sunday. It was wonderful seeing all the little clothes, and toys and baby stuff. Carrie and I were talking, and she agreed that seeing that stuff would send her into thinking about babies again. I thought about that too. I don't think that's it. Think. But maybe. I know Geoff doesn't want anymore, and really, we are perfectly a-ok, 100% good as we are. But what if....what if.....
But I don't think that's it.
There is a beautiful dog on the Niagara Falls Humane Society's site up for adoption. Her name is Gemma. It's a sign, I think. Gemma is one of my favorite characters on Sons of Anarchy. And when Val and I were talking about the show, she remarked how much she liked the name. She said "your next baby needs to be named Gemma". I agreed. Now I am wondering if that baby needs to be a furry one. But I hesitate. Axle is so good, and so amazing with the kids. Geoff raised a good point- am I willing to roll the dice and gamble that we get another dog as good as he is? Or did we make him good through our love and my training? (yeah right!) Hmmmm...I am hesitant....
Acquaintances of ours have just experienced a big move. She got a job in Iqaluit, Nunavut. Yeah, waaaaaay up north. I am not ashamed to say..I am reeking of jealousy. I used to dream of going north. Back then, it was the Yukon. That's originally why I went to school for Fish and Wildlife Technology. I was fucking out of here. I wanted wild. I watch "Into the Wild" and read the book and it speaks to me, so deeply.
I have been running. Running and running and getting no where. I am not dropping any weight, not really. I am trying to be consistent, but it's hard. To run in the morning, I have to be up at 5am. To run at night means I am up until 1am. And now that it's cold and wet, it is so hard to be motivated. Especially when the results just aren't there. But I keep trying. I see people, people that look and act and dress the way I want to be...and I try. But there are the needs..way deep down...one tells me to keep going. The other tells me I need to give up. So hard.
So, what do I need? I don't know. I will keep soul searching, and looking for the signs I believe in, to help direct my way. For now, Sawyer is crying in her sleep, and she needs me.
That'll do.
Rosie N. Grey
The N stands for "needs".
Saturday, November 20, 2010
The King
As all of our extracurricular activities are winding up in time for the holiday season, I am finding myself with a smidgeon of free time. I am often torn at what to do with that time- cleaning, laundry, playing, knitting, watching movies, take a bath, reading...so many choices.
Because of my "adrenal fatigue" (according to my naturopath) I am trying to choose "me" things more often. Whether that is vegging in front of the TV (doesn't happen often, because the movies I like are not often kid-friendly) or knitting or reading..it should be something that I really want to do. Reading tends to win out more often than not, because I can often do 2 of my favorites at the same time- read in a hot bath. Ah. That is my idea of heaven. I love it.
Since I am reading again, I want to make sure that I am making good use of my time. I don't want to invest the small amount of time that I have in a crappy book. Barb leant me 2 good ones by Paul Magrs, "Never a Bride" and "Something Borrowed". Quirky and different, with a supernatural twist. Very cool..I am enjoying them very much.
I also like the Outlander series by Dianna Gabaladon. Romance and sex and war and history, all with a brutal scotsman...love it. I have the latest book in the series and there is a new graphic novel out that I want to check out, so that would be good too.
Also, because I live with Geoff, I often have comics around. Geoff is pretty careful about giving me ones that he thinks I will like. That's how I started reading "The Walking Dead" years ago. With the new TV show out, I have had the itch to go back and re-read it. Same for "Fables". All about fairy book stories come to life, often with suprising twists. Both really good, and good to re-read. Of course, with the release of the new Harry Potter movie, I am thinking about going back to the beginning and starting the series from scratch. Reading the first couple of books brings back amazing memories, from when I first discovered the series. It was Christmas of 2000, and Geoff and I were celebrating Christmas in our first home. We were broke, of course, but happy. I got the first book on the reccomendation of a friend, and read it in a night (probably a matter of hours). When I finished, I told Geoff that we were going that night to get the rest (up to Book 4 was available). We did, and then we both started devouring them. I remember each of us laying on a couch, reading Harry Potter all night, while huge, fluffy snowflakes fell outside and the Christmas tree twinkled between us. It was a great time, and it is a great story.
There are other series that I love too- The Wheel of Time by Robert Jordan (and even though he is dead, books are still coming out!), the Belgariad and the Mallorean by David Eddings. I have my favorites of all time- To kill a mockingbird, The Birthhouse, I, Vampire. I like my junkfood books, like the Judy Garwood romances. I can read one in about 3 hours, and it is just like a bad-for-you snack...just fun.
But ultimately, when I look to re-read something, something that I loved...I usually turn to Stephen King.
He's the king for a reason. He tells a scary-ass story. I just finished Under the Dome. I haven't liked alot of his newer ones (I seem to prefer King's writing when he is all fucked up on coke) but this one harkened back to his older ones. I just leant my boss The Shining and IT, two of my favorites. My boss, Jamie, thought he had read Stephen King. When he told me one of his favorites was Needful Things, and that he hadn't read The Stand, I almost lost my mind. I am weaning him in slowly, but I think I will get him hooked. He in turn lent me Under the Dome and introduced me to Locke and Key, the comic written by Steve's son, Joe Hill. It was good and bloody and scary. Nice.
So anyway, Stevie and his stories. He has actually made me have nightmares. I remember reading Salem's Lot one weekend, when Geoff had gone away to Chicago for the comic convention. He came home to every light in the house on, and when he tried to turn them off, I woke up and yelled at him not to. When he asked why the lights had to be on, I replied "vampires" and went back to sleep. I am a lame-o. But the story is really scary.
Of all of his stories, I think The Stand is my favorite. I am not dissecting it here, or getting into all the reasons why. Suffice it to say, I love the book, most of the characters (I never liked Frannie, but LOVE LOVE LOVE Stu.) and I re-read it on a regular basis. It inspires me to daydream what I would do, when the plague, apocolypse, zombie infection etc comes. Cause I will be a survivor. How could I not be???If you are reading this, and you have never read a Stephen King book or short story, do yourself a favour. Read one. Start with the early ones...you really can't go wrong. Carrie, Christine, Cugo...all good. If novels aren't your style, start with a story. The Richard Bachman stories, Rage and The Long Walk are good. So is The Mist, and Rita Hayworth and the Shawshank Redemption and Apt Pupil.
So, at this point, someone, somewhere is saying "I don't have to read that, I saw the movie." Do yourself another favour. Don't see Stephen King movies. They are shite. I can never understand anyone that says the movie version of IT is scary. If you say that, you didn't read the book. 100 times scarier. A million times. Stephen King writes great stories, but they don't translate to the screen. Some aren't bad (The Mist, Shawshank Redemption and The Green Mile come to mind, but that might be due to Frank Darabont more than anything else), but most are horrible. Just stop, stop talking and read the book.
Ok, one last thought. When I went to college, alot of the boys had come in from the east coast. One boy, John, lived right on the border of Maine, and like we do here, they would often cross into the US to shop. One day, he was in a record store in Bangor, looking at CDs, and he hears a voice behind him asking where all the "good music" was. When the clerk asked what he meant by good music, the man replied "You know, anything recorded before 1979". When John turned to look at some new music, in the "good" music section, he happened to make eye contact with this man. In his words, the guy looked like a werewolf, just before the change. He had a crazy, bushy black beard, wild hair, a bit of a beer gut, and piercing eyes. He held up a Led Zepplin CD, winked at John and smiled, and walked to the counter to pay. John always said that Stephen King looked just like a character from one of his stories. I don't know how true that story is (we were drinking alot when he told me, and I think he was trying to get somewhere with me), but I love thinking of Stephen that way. A little wild, a lot blue collar, and a wee bit scary, just to look at.
Rosie N. Grey
The N stands for "Needful Things??" Whatever....
Thursday, November 18, 2010
Surgery Day
Sebastian made it through his surgery. More importantly, I made it through his surgery.
The morning started early. Dad came by at about 10 to 6 in the morning, to pick up Sawyer. She is spending the night there, so that if we have a rough night with him, we aren't keeping her up. Also, she isn't here climbing all over him and driving everyone crazy with her love.
I thought for a couple of minutes that they were going to cancel again because of the murmur. However a nurse came in, ready to take him down. I asked if they wanted me to come down, to help pave the way. Normally, they don't let parents into the operating room. But because of the autism, she was willing to ask. I also didn't push it. I knew he would be fine either way, but I thought it might make their lives a little easier, if they let me help them. Another anethetist came in, and asked more questions. Once he heard about Sebastian's previous surgery and successful recovery, he was satisfied, and willing to proceed. He was also happy to let me walk him down.
I went back upstairs to wait. I knew the surgery would be quick, they are pulling 2 baby teeth. Geoff ran across the street and got us Timmies- bagel and juice for him, BELT and tea for me. Side note: Geoff had no idea what a bagel BELT was. He thought I was making shit up. God.
After belting down the belt (haha), I just opened my tea to let it cool, and the doctor came in. He said Sebastian was done, and the surgery went well, no stitches needed. He was in recovery and someone would come to get me soon. No sooner had he left, and a nurse came in and told me to make my way down. Only one parent is allowed, and Geoff and I had agreed that it would be me.
I found it pretty easily, and walked in. There was one area in the corner curtained off, so I assumed that was him. I was right. I walked over and behind the curtain was greeted with the sight of my son being pinned the bed by 3 nurses. One of them, an older lady looked up and shook her head.
I immediately said yes, and asked them to drop the side of the bed, so that I could get in with him. Last time, I ended up crawling right in the bed with him, and wrapping him up with my arms and legs to hold him still. I was willing to do it again.
I think, once they realized I wasn't going to get the vapours and start freaking and crying and screaming "GET OFF MY BABY!!", they chilled out and were actually SUPER nice to me. I think I earned some respect when I flipped him up and over and got the IV line from underneath him and cleared it. Sebastian wasn't even aware that I was there in the beginning, because he kept crying for Mommy. It hurt my heart, and I cried most of the time I was down there, but until I looked up at the nurse, she has no idea that I was. That was later, and she just quietly patted the tears on my cheeks and never said a word about it. Neither did I.
I pinned his one arm around me, and held the other, the one with the IV in his hand, in an iron grip. He tried with every ounce of strength in his body to rip that IV out. In his flailings he caught one nurse, a younger one, right in the cheek with his fist. He has poor upper body strength, but he still snapped her head back a bit. To her incredible credit, she didn't bat an eye, or move an inch, or even raise her voice. It was 100% an accident, and she knew that. Sebastian also stuck his finger in my eye. It watered uncontrollably for about 2 minutes, and the nurse alternated cloths- one wiping the blood from Sebastian's mouth and face, and one mopping up my streaming eye.
After about 5 minutes of Sebastian alternating between falling instantly asleep, to waking and trying to pull everything off of his body, the older nurse, God bless her, decided to use common sense. Since the IV was what was driving him crazy, we would take it out. The other nurse hestiated a bit, also for practical reasons- the doctor wanted it in, if he started bleeding or having problems, it was there and ready. The older nurse said that if they needed on, they would put it back, but for now, it was what was causing the problems and it had to go. In 30 seconds, they had it out, and Sebastian almost instantly calmed down. He was in my arms, and his head just dropped to my shoulder and he was instantly asleep.
He woke again, just a few minutes later, agitated because of the cotton ball and tape on his hand, for the bleeding from the needle insertion point. Again, common sense prevailed, and the nurses whipped it off. They asked me to keep an eye on it for excessive bleeding (it didn't), and then got me a giant rocking chair, and let me hold him in my lap and rock him and let him rest. I swear to God, they were angels.
He and I rocked for about 5 or 10 minutes (I am really not sure, I lost track of all sense of time). The nurses started asking me questions about autism, and seemed genuinely interested in my answers. They wanted to know, for the future, the best things to do and not to do. I gave them the only advice that I knew would work- ask the parents. Let the parents help. They know their kids, and they know what works. I said when you know one kid with autism, you know one kid with autism. Every case is different. But I did tell them to do what they did today- use common sense, bend the rules when it makes sense too, and be caring and sensitive. They seemed happy with the compliment, and were grateful.
After a few more minutes, they decided that we could move Sebastian back to his room. I offered to carry him, he is relatively light, and it wasn't far. However, Sebastian woke up, and for the first time, seemed to realize that something had happened to his mouth. He started grabbing at his lower lip, and pulling it out. His mouth started flowing blood again, and he got extremely agitated. The nurse asked if she should call for Geoff and I said yes, I couldn't hold him and keep his hands out of his mouth at the same time. She called up, and requested that Geoff come down. An orderly got there first, and we loaded Sebastian onto a gurnery. He seemed to like that and calmed down quickly. Geoff caught up to us at the end of the hall and we all made out way to his room.
I know this is a super long post. I didn't write this for you, loyal reader. I wrote this for me. I want to remember this. It was a good day. :)
Rosie N. Grey
The N stands for "new deposit for the tooth fairy."
The morning started early. Dad came by at about 10 to 6 in the morning, to pick up Sawyer. She is spending the night there, so that if we have a rough night with him, we aren't keeping her up. Also, she isn't here climbing all over him and driving everyone crazy with her love.
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| Bastian and Minnie |
After Sawyer got bundled off, I woke up Geoff and Sebastian, and we got ready and went. Sebastian was allowed to wear his own pants and underwear, so we dressed him comfy and warm. His surgery was scheduled for 8am, and we were supposed to check in for 630 am. However, at the pre-op tour, the nurses on the floor said they weren't equipped to take the kids much before 7am. So we were in no rush, and took our time. We got there about 10 to 7, got checked in and made our way to the Paeds wing. A very friendly nurse took us and another family to a room at the end of the hall and got us ready. Sebastian got weighed and measured. He hated the oxygen test (a clip on the end of his finger) and freaked for the blood pressure. *sigh* Why is everything difficult?
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| Minnie kissing Mickey- his favorite |
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| Baby Bop for Sawyer |
Anyway- other than that, he was super excited to be there. The last time he was, they cancelled his surgery, so nothing untoward happened and he just had really good memories of his time there. He also really loved the Disney characters all over the walls, especially the one with Minnie Mouse kissing Mickey. Last time, we took his picture in front of it, and we did it again today. We also got a shot in front of just Minnie in her electric blue dress, and a picture in front of Baby Bop for Sawyer.
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| Daddy and Bastian, just before goodbye. |
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| in the playroom, waiting for a few minutes. |
Shortly after that, they came to get us, and took us down to the waiting area. We only sat for a few minutes when the new anthetist (not the crazy, don't-look-in-her-eyes one from last time) came in to talk to us. He asked why the last surgery had been cancelled, and we told him. He asked about the heart murmur that the last one had heard. I was straight with him, and said that Sebastian has had dozens and dozens of doctor's appointments over the years (probably closer to hundreds) and NO ONE has ever heard a heart murmur. No, he doesn't turn blue. No, he isn't often short of breath. Yes, he is active, and is in fact more active now that he probably ever has been before.
He seemed satisfied, and took a listen for himself. He was very thorough. He listened a lot. And yep, he heard it too. Shit. Shit. Double shit.
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| Mom and Bastian- getting ready |
I didn't realize that I would be going right into the operating room. Last time, I stayed with him in a type of staging area, where they gave him a sedative, and suited him up with booties and a cap etc. This time, we walked right down. They gave me a hair net, and I got a cool gown, and Sebastian thought that was pretty funny. I walked right into the operating room with him, he still had his sneakers on. I helped him up on the table, and helped them fasten the monitors to his chest and his foot. I held him down, when he fought the face mask, but he fell asleep in about 30 seconds. After that, they asked me, very nicely, to leave. Everyone in there was amazingly nice and very sweet to Sebastian. That went a REALLY long way in helping me feel better about leaving him.
I went back upstairs to wait. I knew the surgery would be quick, they are pulling 2 baby teeth. Geoff ran across the street and got us Timmies- bagel and juice for him, BELT and tea for me. Side note: Geoff had no idea what a bagel BELT was. He thought I was making shit up. God.
After belting down the belt (haha), I just opened my tea to let it cool, and the doctor came in. He said Sebastian was done, and the surgery went well, no stitches needed. He was in recovery and someone would come to get me soon. No sooner had he left, and a nurse came in and told me to make my way down. Only one parent is allowed, and Geoff and I had agreed that it would be me.
I found it pretty easily, and walked in. There was one area in the corner curtained off, so I assumed that was him. I was right. I walked over and behind the curtain was greeted with the sight of my son being pinned the bed by 3 nurses. One of them, an older lady looked up and shook her head.
"We need your husband."
I must have looked confused, because then she explained that they needed someone strong enough to hold Sebastian down. She looked me up and down and asked "Do you think you can do it?" Seriously?? After all the shit I have been through and had to do to this kid?? Really???I immediately said yes, and asked them to drop the side of the bed, so that I could get in with him. Last time, I ended up crawling right in the bed with him, and wrapping him up with my arms and legs to hold him still. I was willing to do it again.
I think, once they realized I wasn't going to get the vapours and start freaking and crying and screaming "GET OFF MY BABY!!", they chilled out and were actually SUPER nice to me. I think I earned some respect when I flipped him up and over and got the IV line from underneath him and cleared it. Sebastian wasn't even aware that I was there in the beginning, because he kept crying for Mommy. It hurt my heart, and I cried most of the time I was down there, but until I looked up at the nurse, she has no idea that I was. That was later, and she just quietly patted the tears on my cheeks and never said a word about it. Neither did I.
I pinned his one arm around me, and held the other, the one with the IV in his hand, in an iron grip. He tried with every ounce of strength in his body to rip that IV out. In his flailings he caught one nurse, a younger one, right in the cheek with his fist. He has poor upper body strength, but he still snapped her head back a bit. To her incredible credit, she didn't bat an eye, or move an inch, or even raise her voice. It was 100% an accident, and she knew that. Sebastian also stuck his finger in my eye. It watered uncontrollably for about 2 minutes, and the nurse alternated cloths- one wiping the blood from Sebastian's mouth and face, and one mopping up my streaming eye.
After about 5 minutes of Sebastian alternating between falling instantly asleep, to waking and trying to pull everything off of his body, the older nurse, God bless her, decided to use common sense. Since the IV was what was driving him crazy, we would take it out. The other nurse hestiated a bit, also for practical reasons- the doctor wanted it in, if he started bleeding or having problems, it was there and ready. The older nurse said that if they needed on, they would put it back, but for now, it was what was causing the problems and it had to go. In 30 seconds, they had it out, and Sebastian almost instantly calmed down. He was in my arms, and his head just dropped to my shoulder and he was instantly asleep.
He woke again, just a few minutes later, agitated because of the cotton ball and tape on his hand, for the bleeding from the needle insertion point. Again, common sense prevailed, and the nurses whipped it off. They asked me to keep an eye on it for excessive bleeding (it didn't), and then got me a giant rocking chair, and let me hold him in my lap and rock him and let him rest. I swear to God, they were angels.
He and I rocked for about 5 or 10 minutes (I am really not sure, I lost track of all sense of time). The nurses started asking me questions about autism, and seemed genuinely interested in my answers. They wanted to know, for the future, the best things to do and not to do. I gave them the only advice that I knew would work- ask the parents. Let the parents help. They know their kids, and they know what works. I said when you know one kid with autism, you know one kid with autism. Every case is different. But I did tell them to do what they did today- use common sense, bend the rules when it makes sense too, and be caring and sensitive. They seemed happy with the compliment, and were grateful.
After a few more minutes, they decided that we could move Sebastian back to his room. I offered to carry him, he is relatively light, and it wasn't far. However, Sebastian woke up, and for the first time, seemed to realize that something had happened to his mouth. He started grabbing at his lower lip, and pulling it out. His mouth started flowing blood again, and he got extremely agitated. The nurse asked if she should call for Geoff and I said yes, I couldn't hold him and keep his hands out of his mouth at the same time. She called up, and requested that Geoff come down. An orderly got there first, and we loaded Sebastian onto a gurnery. He seemed to like that and calmed down quickly. Geoff caught up to us at the end of the hall and we all made out way to his room.
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| Fat lipped Bastian. He wanted to see what was wrong with his face, so I took this picture to show him. This is after the recovery room, and shortly after returning to his regular room. He is still pretty out of it here. |
Sebastian kept crying "Take it off, take it off!!" It took us a while to figure out what the "it " was that he was talking about. He was pulling at his lower lip. Essentially, it was the freezing in his face ( they gave him a local, to help with the pain when he woke up) that made his lips feel big. He said once "It's big, make it smaller!" I sympathized, because I hate that feeling myself. When we got to his room, the parents of the other little boy were in there, waiting to hear about their son. I think we freaked them out a little bit. Sebastian, while getting better and nowhere near what he was like in recovery, was crying and asking us to take his lip off. I had blood smeared on the sides of my face and sweater. Geoff had a white-eyed, white-knuckled look about him, that being helpless in a situation tends to give dads. The only thing that seemed to help Sebastian was when I told him I would try and wipe the extra lip off his face. I would dip a kleenex in ice cold water, and rub it gently along his lower lip. It seemed to soothe and calm him, and within 15 or 20 minutes, he was close to his old self, laughing a little, listening to the stories Daddy read him over and over, and even drinking some juice and water. The parents across from us got their little boy back- who was all smiles and sunshine. Jerk. They were very nice though too, and offered to share popsicles with Sebastian. He didn't want them, but he did wave to Noah, and said good bye later as we were leaving.
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| Bastian feeling better and a very relieved Mom. |
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| Almost ready to go home. Smiling just thinking about it. |
He recovered quickly from that point on, so that they actually let us go an hour before we expected to be released. He had drank all his juice, we got him cleaned up and washed off, and he was able to stand and walk on his own. He really wanted to print all of the pictures that we had taken during the day, and we had a prescription for painkiller to fill. We made it as far as the pharmacy (I got a Christmas present there! Multi-task score!) and then he was getting antsy. I think the pain meds they gave him before the surgery were wearing off. Geoff dropped us home, ran out for apple juice, ginger ale and pictures. Sebastian and I got snuggled in bed (well, he did, I folded laundry and put it away, so that I could relax and not think about it). He drank lots and has now had 3 bowls of applesauce (homemade by Grandma and Grandpa! Thanks!) He is begging for peanut butter and jam, but since he is supposed to be liquids only today ( I am cheating with the applesauce) I don't want to push my luck. He has marks all over his face and neck from tape and clamps and other things, and huge dark circles under his eyes. But, as with all things in his life, he has come through it with flying colours, and surprised us all. What a trooper.
I know this is a super long post. I didn't write this for you, loyal reader. I wrote this for me. I want to remember this. It was a good day. :)
Rosie N. Grey
The N stands for "new deposit for the tooth fairy."
Shit that stresses me out
I learned in a health and wellness seminar at work this week that I have what is called "chronic" stress. That is to say that my stressed state outweighs my relaxed state and that I am not allowing myself to relax and rejuvenate after a stressful time. Basically, I feel so much stress that I don't know what it is like to not feel stress. I really don't. I don't remember a time that I wasn't stressed. So, per the advice I received, I am delving deep into my soul and sharing with all of you- the shit that stresses me out. Anything crossed off has been taken care of.
1.Accounting course and final 3-hour exam. DONE! Wrote (and bombed) the exam last Saturday!
2.Sebastian's dental surgery. DONE! After a month long delay, finally got the surgery done and done. Aside from some disorientation and the subsequent violence, some bleeding and grumpiness, the kid came it with flying colours.
2a. Sebastian's heart murmur. Yep. This anesthetist heard it too. Shit.
3. Money. This never leaves. Until I win a hundred million dollars in the lottery, this will always be on the list. But it isn't super high. All good.
4.Sawyer's speech. Again, coming along. She is talking much better, and even though she isn't quite where she should be, she is doing great and making strides. Superstar.
5. Running. Still doing it. Moved from week 3 to week 4 finally, after repeating week 3 three times, because I was afraid of what would happen in week 4. I am a fraidy cat.
6. Having a functional and working website for Cracked Lens. I want to make money at something I love and this would go a long way to helping that. But I am seeing some good things coming with this, thanks to Kevin, so I am getting excited about this.
7. Christmas presents. I just want everyone to love what they get, and to have a good Christmas. 'Nuff said.
8. The current cleanliness of my house. This is a big one. I don't know when this will get better. This causes me more stress than is probably healthy. I can actually feel my blood pressure rise when I walk into the house and it is messy. I hate cleaning and then coming home to a pig sty. I hate that my feet crunch when I walk across the carpet, and stick to the kitchen floor. I hate seeing dog hair in the corners. Stress, stress, stresssssssssssss.....
9.Geoff's current state of employment ( or lack thereof). DONE! Geoff is now gainfully employed.
9a. Babysitting situation.
9b. How will Sebastian get on the bus everyday?
9c. What will his schedule be like?
9d. Will this be good for him, meaning Geoff?
9e. How will this impact the photography?
9f. Will Axle be lonely through the day, or can we get a sitter for him?
10. Sebastian's therapy. I want to get private therapy for Sebastian. He is capable of so much more, I think, and neither I or Geoff know how to bring it out of him. I think this therapy would help. It also costs $2000 a month. *sigh* How do I make that work?
11. Sawyer's potty training. I asked Geoff to train her in the summer. I asked again in September. I mention it on a weekly basis. Yep, that's right. It's not done. Not even started. *sigh heavily*
12. The house. I love my house, but I HATE it too. I hate the rooms I haven't touched. I hate the clutter that seems to build on its own on every open surface. I hate the old lady decorating, and the crappy floors and everything that is ugly and not mine. I hate the crappy flowerbeds, and the weedy lawn, and the too-small side porch, and the cracks in the foundation. I hate the old windows, the old furnace and the non-existent air conditioner. And I hate that I never seem to have the money, or the time to fix it.
Ok, that's all for now. That's enough. Next post- Things that depress me. #1- this list.
Rosie N. Grey
The N stands for "next on the list...."
1.
2.
2a. Sebastian's heart murmur. Yep. This anesthetist heard it too. Shit.
3. Money. This never leaves. Until I win a hundred million dollars in the lottery, this will always be on the list. But it isn't super high. All good.
4.
5. Running. Still doing it. Moved from week 3 to week 4 finally, after repeating week 3 three times, because I was afraid of what would happen in week 4. I am a fraidy cat.
6. Having a functional and working website for Cracked Lens. I want to make money at something I love and this would go a long way to helping that. But I am seeing some good things coming with this, thanks to Kevin, so I am getting excited about this.
7. Christmas presents. I just want everyone to love what they get, and to have a good Christmas. 'Nuff said.
8. The current cleanliness of my house. This is a big one. I don't know when this will get better. This causes me more stress than is probably healthy. I can actually feel my blood pressure rise when I walk into the house and it is messy. I hate cleaning and then coming home to a pig sty. I hate that my feet crunch when I walk across the carpet, and stick to the kitchen floor. I hate seeing dog hair in the corners. Stress, stress, stresssssssssssss.....
9.
9a. Babysitting situation.
9b. How will Sebastian get on the bus everyday?
9c. What will his schedule be like?
9d. Will this be good for him, meaning Geoff?
9e. How will this impact the photography?
9f. Will Axle be lonely through the day, or can we get a sitter for him?
10. Sebastian's therapy. I want to get private therapy for Sebastian. He is capable of so much more, I think, and neither I or Geoff know how to bring it out of him. I think this therapy would help. It also costs $2000 a month. *sigh* How do I make that work?
11. Sawyer's potty training. I asked Geoff to train her in the summer. I asked again in September. I mention it on a weekly basis. Yep, that's right. It's not done. Not even started. *sigh heavily*
12. The house. I love my house, but I HATE it too. I hate the rooms I haven't touched. I hate the clutter that seems to build on its own on every open surface. I hate the old lady decorating, and the crappy floors and everything that is ugly and not mine. I hate the crappy flowerbeds, and the weedy lawn, and the too-small side porch, and the cracks in the foundation. I hate the old windows, the old furnace and the non-existent air conditioner. And I hate that I never seem to have the money, or the time to fix it.
Ok, that's all for now. That's enough. Next post- Things that depress me. #1- this list.
Rosie N. Grey
The N stands for "next on the list...."
Monday, November 8, 2010
Happy Birthday Bastian.
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| Sebastian on my left arm. He is always inside my hugs. |
Rosie N. Grey
The N stands for "November 9th, 2001"- the day I became a mom and met him for the first time.
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| Me and him He is about 3 weeks old, and I am still scared shitless. |
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| His 2nd Halloween. He's Captain Hook. He still wasn't talking at this point. |
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| Bath time is happy time. I remember a lot of laughing. |
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| Me and him PEI |
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| Blueberry scented marker and a drive to mouth everything. |
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| 1st day of school. I cried so hard that day, I could barely function. He wasn't even 4, and I had to send him away on a bus. |
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| Grammie took this. One of the best ever. |
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| Me and him. Camping at Elora Gorge. |
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| Me and him. Finishing the walk for homelessness in Toronto. |
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| Running the 50 meter dash for the Special Olympics in 2009. I have never been so proud. |
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| Graduating from the NPCC. Something he was ready for, but I was not. |
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| Last fall. Best smile ever. |
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| Me and him. This summer in a cemetary. |
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| Me and him. At Grandma and Grandpa's this summer. |
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| Just me and him. |
Sunday, November 7, 2010
Kindle or not to Kindle?
Ok, dilemma of major proportions. I can't decide if I want a Kindle or not.
On one hand- hundreds of books, at my literal fingertips. Easily portable. Fun new toy.
On one hand- hundreds of books, at my literal fingertips. Easily portable. Fun new toy.
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| Is this awesome? |
On the other hand- I love books- the feel, the smell, cracking the spine. Borrowing, lending. I love books.
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| Books are fucking awesome. |
Torn, torn, torn.
Help me people, I need guidance.
Rosie N. Grey
The N stands for "new fangled technology."
Saturday, November 6, 2010
zzzzzZZZombiessssssssssss.....
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| It's hilarious that Axle is peeking around my leg. |
Last Sunday, Geoff and I were totally geared up and excited about the new TV show, "The Walking Dead." I have all the trade paper backs, and Geoff has read most of them (it's a comic book, for those that don't know) and I love, love, LOVE it.
The band of zombies I have tattooed around my thigh is from the cover art on the tradepaper backs.
So, I was super-dee-duper excited about the show. Also trepidacious, because it would be so easy for them to fuck it up. The book is very dark, and everyone in the story, with the exception of Rick, the main character, is able to be killed. I wasn't sure how close to the story it would be, and I am still not sure how much they will be able to pull off (for example, there are horrific rape and torture scenes later in the book, as well as child murders. Dark.)
We loved it!
The show was so worth it. I can't wait for tomorrow, and the next episode. It's gonna be so good.
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| Geoff- pissed that I wanted to take his excited "before" face, when he is trying to find the right channel. We now know it is channel 189, |
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| me- super excited. Plus it was Halloween, so I am jacked on sugar. |
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| Zombie appropriate snacks. Note the Halloween candy. Awesome. |
Rosie N. Grey
The N stands for "Never 'Nuff Zombies."
Autism rocks...and flaps and spins...
I have been neglectful, faithful readers, and for that I apologize. I have, as always, had a crazy busy week, so the blogging has fallen behind again.
I spent the last 3 days (Wed, Thur and Fri) at an autism symposium in Toronto. It was really good, and I am really glad I went. I decided against staying up there, because I wanted to see the kids, so I drove up and back every day. It was 4 to 5 hours of driving each day. Craziness. And on the third day, I got hit by a rock and got a big chip in my windshield that I now have to have fixed. Mother fucker.
Anyhoo...the symposium was really good. The first day was an all day session with a lady called Michelle Garcia Winner. She is a specialist in social behavior and autism. She works mainly with high functioning and Asperger's, but she had some great tips, and was very engaging and funny. I found her talk very good and useful. From her I really started to understand how I make assumptions that Sebastian understands the basic elements of socializing when that might not be true at all. I assume that when I tell him to "smarten up", he knows that I mean "behave." But he might not. I also learned that declaring behavior appropriate or inappropriate implies that an emotional judgement has been made, and that it is better to call it "expected and unexpected" behavior. She also gave me thoughts about new ways to interact with Sebastian, like working on "just me" and "thinking of others" times and expected actions, "weird thoughts", and observing the world around us. Through observing, he will learn what I expect, and I might learn what he thinks. Good session.
The next day was not so good. The key note speakers were OK. The first was fine, but boring, (since off the top of my head, I can't remember what she talked about) but the second...shit. She was a geneticist, and obviously thought all the rest of us were too. I actually got up and left before she was done (only 10 minutes). It let me jump the food line across the street.
The afternoon was a bit better. I went to one about Family Consortium planning. This is planning for kids with disabilities, once they have grown into adults with disabilities. Now, those of you that know me really well know that I don't talk about Sebastian's future a whole lot. It hurts my heart. I try and be realistic, but the facts are hard to swallow. So I don't think about them. I worry about what will happen when I die. I know all parents worry about that. But the fact is, most parents know that their kids will (likely) have a job, a partner, and be somewhat self-sufficient. I have none of that as a consolation. I feel a little better now that Sawyer is in the picture, but I don't want her growing up to resent the fact that she is destined to be her "brother's keeper." And I don't want that for him. I need to stop writing about this, before the tears really come.
Because of the low performance of Day 2, I considered bailing on Day 3. I had gotten to go the symposium for about 60% off the normal price, so I felt I had gotten my money's worth. But in for a penny, in for a pound, I guess. I headed off again.
So, in a nutshell, for those of you that made it through this one, was my week. I found it so fascinating and encouraging. I was depressed for a while, not because of the autism, but because there is so much time that has been lost. I haven't done enough for him. I don't do enough for him. I get lost in other things, and in my own life, and I am leaving him behind. But, I made a conscious decision to not think that way. If he could learn something 3 years ago, he can learn it now. And I won't be kicking myself in 2 years, thinking "Why didn't I try?" I am just looking forward...and crossing my fingers.
Rosie N. Grey
The N stands for "Neurotypical".
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| Stage in main hall |
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| Like minded people. Lots of us. |
Anyhoo...the symposium was really good. The first day was an all day session with a lady called Michelle Garcia Winner. She is a specialist in social behavior and autism. She works mainly with high functioning and Asperger's, but she had some great tips, and was very engaging and funny. I found her talk very good and useful. From her I really started to understand how I make assumptions that Sebastian understands the basic elements of socializing when that might not be true at all. I assume that when I tell him to "smarten up", he knows that I mean "behave." But he might not. I also learned that declaring behavior appropriate or inappropriate implies that an emotional judgement has been made, and that it is better to call it "expected and unexpected" behavior. She also gave me thoughts about new ways to interact with Sebastian, like working on "just me" and "thinking of others" times and expected actions, "weird thoughts", and observing the world around us. Through observing, he will learn what I expect, and I might learn what he thinks. Good session.
The next day was not so good. The key note speakers were OK. The first was fine, but boring, (since off the top of my head, I can't remember what she talked about) but the second...shit. She was a geneticist, and obviously thought all the rest of us were too. I actually got up and left before she was done (only 10 minutes). It let me jump the food line across the street.
The afternoon was a bit better. I went to one about Family Consortium planning. This is planning for kids with disabilities, once they have grown into adults with disabilities. Now, those of you that know me really well know that I don't talk about Sebastian's future a whole lot. It hurts my heart. I try and be realistic, but the facts are hard to swallow. So I don't think about them. I worry about what will happen when I die. I know all parents worry about that. But the fact is, most parents know that their kids will (likely) have a job, a partner, and be somewhat self-sufficient. I have none of that as a consolation. I feel a little better now that Sawyer is in the picture, but I don't want her growing up to resent the fact that she is destined to be her "brother's keeper." And I don't want that for him. I need to stop writing about this, before the tears really come.
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| Even Axle got his "autism" on. |
Anyway, the family consortium is like a group home, but one where the families of the individuals living in the home are almost entirely in charge. They made final decisions on staffing and schedules and food and events and everything. They work with a service provider that would provide staff and therapists etc, but the families get final say in everything. It was a little boring, and since the speakers were from the US, they didn't know how things worked in Canada. But it gave me hope and something to think positively about and that is always good.
The final session of the 2nd day was one that I was REALLY looking forward too. It was called "I just can't help it: OCD and Autism". Bastian's stimms have been really strong lately, and I was hoping for some concrete ideas to help manage or every diminish them. But alas...it was another scientist, talking about how interesting his research is. But none of it was practical or in anyway effective to the life we are living now. *sigh*
Because of the low performance of Day 2, I considered bailing on Day 3. I had gotten to go the symposium for about 60% off the normal price, so I felt I had gotten my money's worth. But in for a penny, in for a pound, I guess. I headed off again.
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| The kid has sass. |
I am so glad I did. Day 3 was wonderful. I listened to two sessions with Paula Kluth. If you have a school aged child with an intellectual disability, I highly encourage you to look her up. Her primary focus is inclusion in schooling for children with disabilities, including autism. She is engaging and smart and funny and her approach is just straight up common sense. But she made me look at Sebastian differently. She inspired me. She talks about kid's obsessions ( the very thing I was hoping to hear about the day before) and how they are not necessarily a bad thing. That they can be used to help kids learn. That they are not secondary to the kid's life, but an integral part of their personality that should not be shunted aside, or used as a reward. If your kid loves dinosaurs, have him learn sequencing by looking at the different ages of dinosaurs. If the kid loves washing machines let him learn to read with the owner's manual. Use your kid's passions, collections, rituals and help them learn. I immediately thought of Sebastian's papers and pictures. How I could sneak sight words, daily instructions, math problems and other things into his papers. I am working on it already.
I also sat in on a sessions with Stephen Shore. Professor Shore is on the spectrum (Aspergers) and was talking about sensory issues. He was awkward to listen to at first, but as he continued, I was mesmerized. He was talking about Sebastian. About how it was impossible for him to sit for a haircut, because he could feel the pull of each individual strand of hair as it was cut. About how certain textures under his fingertips or in his mouth were incredibly soothing, and others would make him vomit. About how he would ignore his mother's call because he honestly didn't know that she was there, even though she was a foot away. He talked about how some things that we call stims, or OCD rituals might actually be sensory issues and neurological requirements or body needs. I immediately thought about Sebastian and his 5-second clips of movies. Sebastian (for those that don't know) will watch and rewind the same 5 to 10 seconds of a movie, and watch it, for hours. He will jump and flap and hum while he watches it, over and over and over and over...until either Geoff or I lose it, and scream at him to shut it off, or hide the remote control. He can't stop it..no matter how many times I scold him, or talk with him or even slap his hand. He CAN'T stop. And now, rather than believe that it is something OCD driven, I wonder if it is sensory related. Is it the movement on the screen (he tends to pick an action filled clip- someone flying, someone falling down)? Is it the auditory repetition that he finds soothing? I don't know. He can't tell me. So, my plan is to observe, and try my best to figure out why he does it. And once I can figure that out, maybe I can figure out something else that can be done to meet this need he has. And if I can do that, maybe I can find a way to meet this need in a way that doesn't inhibit but might actually encourage his integration into the "typical" world. Big order. HUGE. But I'm gonna try. And I am also going to stop yelling at him for it. So, in a nutshell, for those of you that made it through this one, was my week. I found it so fascinating and encouraging. I was depressed for a while, not because of the autism, but because there is so much time that has been lost. I haven't done enough for him. I don't do enough for him. I get lost in other things, and in my own life, and I am leaving him behind. But, I made a conscious decision to not think that way. If he could learn something 3 years ago, he can learn it now. And I won't be kicking myself in 2 years, thinking "Why didn't I try?" I am just looking forward...and crossing my fingers.
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| Autie and Neurotypical- aka Sebastian and Sawyer |
The N stands for "Neurotypical".
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