Friday, April 27, 2012
Sunday, April 22, 2012
How about kitties?
For jillsmo.
Gotta love those kitties. They have such a nice, cushy life, lounging about the house, being kitties. Mew.
Friday, April 20, 2012
Wednesday, April 18, 2012
Spring Surprise!
Ok, you guys need a break from my depression, and this morning, so did I. But I especially needed to run outside and cover my electric lawn mower with a tarp, because, hello! It is spring! It rains! And it started to. (Good news- I did manage to cut my grass a few days ago. I just failed to put the lawn mower back into the shed, because a bunch of crap I had shoved in the shed to protect from the snow that never arrived fell over as I pulled the mower out. And you know what a pain that is.)
So I dashed outside to save my mower, since I have already killed one, and being the distractible give-a-mouse-a-cookie type, I noticed the sandbox I bought last year has completely deteriorated (what do you mean, composite is supposed to last forty years? It didn't make it six months!), and the new one (ok, its a wood vegetable bed, sue me) is still in the car. The plot where it belongs is scattered with the remnants of plastic box, plastic sand toys that got left out, sand, and lots of weeds. So I decided those weeds should go before I put efforts into cleaning the plastic shards up and putting up the new box, even though it was raining. Lightly.
So I reach down, grab a good handful of weeds, and pull.
There is this moment in life when your brain registers in your mind that something is amiss, just before you really understand what is amiss, that sets you at the edge of a chasm of fear and oblivion, because you are at the brink of Unknown Terror. It is that moment that can grab your lungs, squeeze, and creates this really amazing sound, for which we have no truly appropriate word.
Something was amiss.
And it was alive. In my hand.
Grass, weeds, and small northern brown snake took to flight from my palm as I screamed like a little girl.*
Now, you can place that next to your picture of me doing battle with turkeys.
*He was not harmed. I am not afraid of snakes, except for copperheads, so once my brain registered is was, in fact, a snake, I was fine. I made sure he slithered away smoothly and happily into the weeds around the base of my lilacs before not pulling any more weeds and heading back into the house to Do Something Else.
So I dashed outside to save my mower, since I have already killed one, and being the distractible give-a-mouse-a-cookie type, I noticed the sandbox I bought last year has completely deteriorated (what do you mean, composite is supposed to last forty years? It didn't make it six months!), and the new one (ok, its a wood vegetable bed, sue me) is still in the car. The plot where it belongs is scattered with the remnants of plastic box, plastic sand toys that got left out, sand, and lots of weeds. So I decided those weeds should go before I put efforts into cleaning the plastic shards up and putting up the new box, even though it was raining. Lightly.
So I reach down, grab a good handful of weeds, and pull.
There is this moment in life when your brain registers in your mind that something is amiss, just before you really understand what is amiss, that sets you at the edge of a chasm of fear and oblivion, because you are at the brink of Unknown Terror. It is that moment that can grab your lungs, squeeze, and creates this really amazing sound, for which we have no truly appropriate word.
Something was amiss.
And it was alive. In my hand.
Grass, weeds, and small northern brown snake took to flight from my palm as I screamed like a little girl.*
Now, you can place that next to your picture of me doing battle with turkeys.
*He was not harmed. I am not afraid of snakes, except for copperheads, so once my brain registered is was, in fact, a snake, I was fine. I made sure he slithered away smoothly and happily into the weeds around the base of my lilacs before not pulling any more weeds and heading back into the house to Do Something Else.
Sunday, April 15, 2012
Three Minutes.
We were at the park. We've been spending a lot of time at the park lately, because going farther involves a lot of prep and anxiety, and I just haven't been able to do it alone anymore. The park is familiar, the boundaries well-set, and I can actually do a little writing or grading or whatever. You know, he wanders about doing the Joey thing, and I sit in a set place where he knows I will be, and do the Mom thing. And Andy runs about doing the Andy thing. And I do a regular headcheck. Child one, child two. Child one, child two.
Today, I looked up doing my headcount, and three boys who looked alike (must be brothers or cousins) were headed straight for me. This is never a good sign; and sure enough, they complained that Joey was cussing at them. Joey's explanation was that they were "being mean" and "ignoring me." So we had a little talk about how some people are not interested in being friends, and we should just leave them alone. Then we talked about not using bad words, and that we had been having this discussion all week, so it was time for him to be suspended from the Wii for the evening. Then he bounced off with instructions to tell his brother we were leaving in ten minutes.
And I finished up reading the paper I was grading, about three minutes, and looked up for a head check. Child one....
No child two.
I gathered my things and headed over to Andy, asked him if he could see Joey. After a brief look about, the answer was no. He ran up the hill. No Joey. The park realized I was looking for Joey, and I started getting reports. He had gone up the hill. He had been seen on one road. He had been seen on the other road. He certainly was not here.
Andy ran ahead to check the car, the other adults spread out in a search; and I called JoeyAndyDad to get him on the move. We agreed for me to jump in the van with Andy and start along the familiar path home.
In another minute, I had the call from JoeyAndyDad- Joey was found... he had made it about 4 blocks, 2/3 the way home. He must have run part of the way, and started out as soon as I released him to find his brother.
My world just contracted a little more.
Today, I looked up doing my headcount, and three boys who looked alike (must be brothers or cousins) were headed straight for me. This is never a good sign; and sure enough, they complained that Joey was cussing at them. Joey's explanation was that they were "being mean" and "ignoring me." So we had a little talk about how some people are not interested in being friends, and we should just leave them alone. Then we talked about not using bad words, and that we had been having this discussion all week, so it was time for him to be suspended from the Wii for the evening. Then he bounced off with instructions to tell his brother we were leaving in ten minutes.
And I finished up reading the paper I was grading, about three minutes, and looked up for a head check. Child one....
No child two.
I gathered my things and headed over to Andy, asked him if he could see Joey. After a brief look about, the answer was no. He ran up the hill. No Joey. The park realized I was looking for Joey, and I started getting reports. He had gone up the hill. He had been seen on one road. He had been seen on the other road. He certainly was not here.
Andy ran ahead to check the car, the other adults spread out in a search; and I called JoeyAndyDad to get him on the move. We agreed for me to jump in the van with Andy and start along the familiar path home.
In another minute, I had the call from JoeyAndyDad- Joey was found... he had made it about 4 blocks, 2/3 the way home. He must have run part of the way, and started out as soon as I released him to find his brother.
My world just contracted a little more.
Saturday, April 14, 2012
A Chink In the Armor
The world is coming to an end. Or more realistically, there is a tiny crack in one of the screens of the Nintendo DS.
Joey found it this evening when Andy wanted to watch Sonic the Hedgehog instead of playing Wii. After a hard day of baseball and park, Joey wanted to relax with his World 8 Castle on the DS. Some days, you just gotta have some Luigi.
What he found was a crack. We already had been plagued by the infamous hinge crack, but he accepted a clear case as a quick fix. But a screen crack isn't so simple. He was devastated. He curled up next to me, playing his game, in tears because he was so upset about the screen being cracked, and perseverating on it.
"It's a crack. It's broken! My DS is broken!"
Sore at heart that I could not fix this, nor can we afford a new one right now, I sent the child up to his father. JoeyAndyDad did his best, cleaning the screen and the game, making sure everything still worked.
Joey came down again, still sniffing, but with better words, such as, "It' just a tiny crack!"
Then he curled up next to me, and said, "Daddy did his best. I appreciate him trying."
That's my boy.
Joey found it this evening when Andy wanted to watch Sonic the Hedgehog instead of playing Wii. After a hard day of baseball and park, Joey wanted to relax with his World 8 Castle on the DS. Some days, you just gotta have some Luigi.
What he found was a crack. We already had been plagued by the infamous hinge crack, but he accepted a clear case as a quick fix. But a screen crack isn't so simple. He was devastated. He curled up next to me, playing his game, in tears because he was so upset about the screen being cracked, and perseverating on it.
"It's a crack. It's broken! My DS is broken!"
Sore at heart that I could not fix this, nor can we afford a new one right now, I sent the child up to his father. JoeyAndyDad did his best, cleaning the screen and the game, making sure everything still worked.
Joey came down again, still sniffing, but with better words, such as, "It' just a tiny crack!"
Then he curled up next to me, and said, "Daddy did his best. I appreciate him trying."
That's my boy.
Friday, April 13, 2012
Adventures and Realities
The sky is high and blue; only the small, puffy clouds that announce a glorious spring day punctuate the perfection. It's cool and breezy, and we have no place we have to be-- no school, no sports, no therapy. I so wanted to go to the zoo today.
When the boys were small, this was the kind of day that would find us on an adventure. We'd pack ourselves some snacks and drinks and spare clothes, the rest of the travel kit, hop in the car, and go explore the world. Zoo, beach, museum, mountains, Jamestowne, park, aquarium, Dinosaurland, somewhere new and interesting and fun. We'd look for shark teeth or find sheep at Wakefield or ride out to feed the goats or chase chickens.
No, these outings were not the same as one might have without an autistic child in tow. Joey might not see as much or understand as much or even care as much; but we were out and about and doing.
It is a life we have left aside the road. With bolting, I can't go with two boys anywhere by myself anymore. We must have a ready set of hands and legs to run in case of a sudden anxiety attack. Going anywhere outside a 20 minute drive now involves huge preparation for both boys, with very limited possibilities for success even so. Anything interrupting comfortable, predictable sameness risks major consequences. It is no longer safe for my boys to have only one adult with them.
Even when they were little, not every outing was a picture of perfection. We have pulled Joey about a zoo in a wagon when he refused to walk. I have sat on benches with Joey and had Andy wait for calming or hunger to be appeased. There was the infamous bolt at the Renaissance Faire, when Joey was being chased by fully costumed knights. Thank goodness some kind soul managed to watch Andy while we got Joey out of the woods.
But there was also the trip when the budgies landed on our sticks and we got to let them, and feed a giraffe. There was that beautiful first time Andy saw dinosaurs, and his face was alight with dreams. There was the trip when we watched rays glide through the water like birds. There were happy lunches in Williamsburg, smiling faces on 15th century boats, and happy watching of orangutans and playing on giant pizzas. They may not have all been rousing successes, but at least we learned to try.
Now, I think hard before I even take them to the park. Joey wanders about with a shovel or spoon, writing in the air and occasionally shouting things at random, or roaring like Bowser until the other kids steer clear of him. Taking him to a different park can be overwhelming, as he displayed all too clearly just yesterday. Is it worth all the anxiety and stress? There was a time when I answered yes. That was before anxiety meant Joey might run into the street.
Still, I so wanted to go to the zoo today.
When the boys were small, this was the kind of day that would find us on an adventure. We'd pack ourselves some snacks and drinks and spare clothes, the rest of the travel kit, hop in the car, and go explore the world. Zoo, beach, museum, mountains, Jamestowne, park, aquarium, Dinosaurland, somewhere new and interesting and fun. We'd look for shark teeth or find sheep at Wakefield or ride out to feed the goats or chase chickens.
No, these outings were not the same as one might have without an autistic child in tow. Joey might not see as much or understand as much or even care as much; but we were out and about and doing.
It is a life we have left aside the road. With bolting, I can't go with two boys anywhere by myself anymore. We must have a ready set of hands and legs to run in case of a sudden anxiety attack. Going anywhere outside a 20 minute drive now involves huge preparation for both boys, with very limited possibilities for success even so. Anything interrupting comfortable, predictable sameness risks major consequences. It is no longer safe for my boys to have only one adult with them.
Even when they were little, not every outing was a picture of perfection. We have pulled Joey about a zoo in a wagon when he refused to walk. I have sat on benches with Joey and had Andy wait for calming or hunger to be appeased. There was the infamous bolt at the Renaissance Faire, when Joey was being chased by fully costumed knights. Thank goodness some kind soul managed to watch Andy while we got Joey out of the woods.
But there was also the trip when the budgies landed on our sticks and we got to let them, and feed a giraffe. There was that beautiful first time Andy saw dinosaurs, and his face was alight with dreams. There was the trip when we watched rays glide through the water like birds. There were happy lunches in Williamsburg, smiling faces on 15th century boats, and happy watching of orangutans and playing on giant pizzas. They may not have all been rousing successes, but at least we learned to try.
Now, I think hard before I even take them to the park. Joey wanders about with a shovel or spoon, writing in the air and occasionally shouting things at random, or roaring like Bowser until the other kids steer clear of him. Taking him to a different park can be overwhelming, as he displayed all too clearly just yesterday. Is it worth all the anxiety and stress? There was a time when I answered yes. That was before anxiety meant Joey might run into the street.
Still, I so wanted to go to the zoo today.
Tuesday, April 10, 2012
Ten Years Ago
Ten years ago, I was a brand-new mom of a beautiful, squishy, soft baby boy. When I first touched his cheek, it was so soft, it was like touching nothing at all. My Joey came into the world via emergency c-section, precisely at 8pm. And who could not love that beautiful, smoochy Buddha Buddy? 
It's hard to imagine loving someone more than the moment my Joey came into the world. Until the next moment came, and we all loved him even more. Then the next moment came, and we loved him even more... If you have never had a newborn in your arms and sniffed that newborn baby head, you cannot possibly imagine the true meaning of the universe; until you smooch that baby head, you cannot imagine the totality of existence. There is nothing more life-changing than the real understanding that life is more than just you. That the cosmos is bigger than just you. Not just know it. Understand it.
I had no idea how much I would learn from my Joey. If I had known, I would have had him years sooner. And he would have a lot more siblings. When Joey was born, my mom said I would be amazed how fast the time would go. She's right. I'm staggered. Time slips through our lives with no turning back, and the best you can do is hug your dear ones tight and enjoy the ride. Fortunately, Joey still loves to be hugged. And smooched. And squished really, really good.
Happy Birthday, Buddha Buddy. You are my Joey-Boy, forever and ever.
Monday, April 09, 2012
Being Aware: What Does Autism Look Like?
With autism awareness month upon us, one of the questions I often get from those not familiar yet with autism is, what does autism look like? There are several different reasons for asking. Some folks want a list of thing to "look for" in their own family and friends, for a sort of self-diagnosisof things they see. This is a difficult reason to answer, because autism does not manifest in one single way; every autistic person is unique, just like the rest of us. 
Also, when I start making that list, I am often interrupted by comments such as "well, I do that, and I'm normal! (or not autistic!)" because so many of the red flags are not a matter of doing or not doing, but a matter of degree. I wind up in the discussion of the difference between a tantrum and a meltdown. It is hard to explain to someone who has never seen one or the other. Where does one draw the line between "very focused" and "hype-focused"? Sometimes it is not so obvious. And some people are just not very bright, and trying to tease the knife edge between them is useless. Sometime you just have to say, "yes, I know you really like cats, but it doesn't get in the way of you doing other things, like eating." Which isn't the boundary at all, but at least they get the idea. 
Then there are people who ask this question because they want to look at random strangers and diagnose them. After all, with many disabilities, you can see the person is disabled. They have visible differences- wheelchairs, for instance. Or distinctive facial features. Also, I get a lot of comments about how Joey doesn't look disabled- especially when I pull into the handicapped parking spot and get out our hangtag. 
Autism is an invisible disability. You can't look at someone and say, "oh, s/he must be autistic!" You need other cues. That is something to keep in mind as you walk around in the wide world- just because that person doesn't look disabled, doesn't mean they might not have special needs. Be prepared to meet them so they can join in the working of the world. After all, you want your special needs met, right? In fact, people who don't meet them often get labeled very quickly in your mind as a person to steer clear from, right? 
Anyone you meet might or might not be autistic. Autism occurs in people with or without other disabilities. Because autism is a pervasive neurological disorder, other disabilities can be bundled into the issues. Or not. Consequently, autism looks different for everyone- as uniquely as you and I look from each other. Autism is a diagnostic label related to certain behaviors and deficits; it may not even be a single condition or state, but a variety of pervasive issues that have similar results. Social connection/social skill difficulties, communication disorders, issues of movement. Neurology is pervasive in our bodies, so anything inside or out might be affected- sensory systems, digestive systems, respiratory systems, endocrine systems... I could go on. 
So there is no one way autism "looks". I can only tell you what it looks like for us. And for us, JOey is the ultimate face of autism; autism is intrinsic to who Joey is and how he experiences the world. Watching him, listening to him, accepting him helps us to have new eyes and see from new angles, to understand the world from a point of view we could never have imagined without him. 
What does autism look like? It looks like birthday parties and video games and days at the beach. It looks like grins and giggles and sparkly blue eyes. It looks like round rosy cheeks and running around the bases. It looks like homework and balloons and tricycles. It looks like a boy, growing up fast. 
To us, autism is a roller-coaster, much like raising any other child, with the difference of the extremes. You notice the difference when you see Joey next to his peers; the things they do oh-so-easily (such as, say, talking and walking), are not as easy and free with Joey. But when you just have him, can you see it? 
Well, can you?
Friday, April 06, 2012
Wednesday, April 04, 2012
It was a very long day
And you know it is going to be, when the OT comes out and cheerfully informs the parents that today's session was about "dealing with disappointment!" And then, just as cheerfully, tells you that they had an egg hunt, but when the kids opened the eggs, they were full of stuff like paper clips and crumpled paper, and the kids then had to practice saying something nice about the object.
Yeah, I know why this is done in a social skills group, and the point, and all that. I can pull apart the layers of it like an onion, and go on for several blog posts about how great this exercise is supposed to be in teaching this lesson and that lesson. Blah, blah, blah. But for us, what it meant was I was heading straight into Hell.
See, Joey managed to hold it together for the therapists and his friends, but once we got in that car, it all broke loose. Yes, I know its because he trusts us and was tired and think about how difficult the OT was and blah blah blah. That isn't going to take the bruise off my arm or the tooth prints- his own- off his, thanks. And Person at McDonald's Who Forgot To Leave Off The Ketchup, Mustard, Onions and Pickles From Our Sandwich? Yeah, a big thanks for nothing to you, too. Oh, and that regular coke you gave me? You could have killed me. But that's for another blog post.
We didn't quiet down until i gave him the pom-poms to shake at Andy's soccer game. But don't worry. We fired right back up when we hit the car, even after being so very happy to see some neighbors Joey adores and running around with them for a few minutes.
Yeah. Long day, packed into the four hours we have after the school bus drops him at my door.
Then I read about Daniel Corby. The idea that it would "unjust to let him continue living" makes me want to run screaming into the night. Unjust to allow another person to continue to live? Why?
Oh, right. Because this four-year-old was autistic. {*insert ugly word of choice here*}
I selected the particular article to link to about it because when I linked, there were no comments yet. And I didn't want there to be comments, because when you go to ones with comments, you run screaming into the night to jump off a cliff. I don't care what resources you do or don't have, what culture you are part of, or what society thinks of you. There is no justification for taking another innocent human life. To take a life that is trusting you to protect it? What, you think disability is worse than death?
It is shocking how many people do. And not only do they think it is worse than death, they think and firmly believe that people with disabilities are less than human, and deserve death. That people with disabilities have no rights, no feelings, no skills, no purpose, no value. They are less than objects, less than dirt. Some people are more subtle about it than others, but the feeling rises to the surface in ugliness that is so insidious and horrible that it is hard to know what to say or how to fight against it. Our culture, our language has difficulty communicating counter-concepts in a way that makes it clear how wrong and ugly and evil such ideas are, and yet how ingrained they have become. What would I have thought before I had Joey in my life? Sometimes I find it a terrifying thought.
Another exhausting vein of comment is people who complain that people with "high functioning" loved ones have no clue what it is like to have "low functioning" loved ones. I have news for them. The problems are different. Am I lucky to have a child who can speak? Yes. Even when he is screaming at me, "I hate you! You hate me! Just kill me now!" and beating on my arm so hard I worry that come day he might break it? Yeah- different problems. But dismissing my point of view in discussing the murder of a child just because he is autistic, simply because my child is "higher functioning" that yours? That is low. Very. Low.
I've been fortunate in being able to spend more time this year in Joey's classroom, and volunteering for several of the special ed kindergartens this year. I've seen a good range of "functioning." I am still convinced that several students would be able to "function" better if they were given more understanding and people "listened" to them better, instead of imposing their own ideas and wants upon the kids. I have seen a range of problems, issues, challenges- and strengths, gifts, and hard work- but each of these kids, each of these families, is unique, meeting their challenges and lives with varying degrees of grace and success. Special needs means special efforts, no matter what the challenges or the strengths. Judging another family because their child is "more disabled" or "less disabled" is just another way of dismissing someone else's hard work and challenges. It is assuming you know more about that other person's life and experience than you do.
And none of those challenges justifies murdering a child. Period.
Yeah, I know why this is done in a social skills group, and the point, and all that. I can pull apart the layers of it like an onion, and go on for several blog posts about how great this exercise is supposed to be in teaching this lesson and that lesson. Blah, blah, blah. But for us, what it meant was I was heading straight into Hell.
See, Joey managed to hold it together for the therapists and his friends, but once we got in that car, it all broke loose. Yes, I know its because he trusts us and was tired and think about how difficult the OT was and blah blah blah. That isn't going to take the bruise off my arm or the tooth prints- his own- off his, thanks. And Person at McDonald's Who Forgot To Leave Off The Ketchup, Mustard, Onions and Pickles From Our Sandwich? Yeah, a big thanks for nothing to you, too. Oh, and that regular coke you gave me? You could have killed me. But that's for another blog post.
We didn't quiet down until i gave him the pom-poms to shake at Andy's soccer game. But don't worry. We fired right back up when we hit the car, even after being so very happy to see some neighbors Joey adores and running around with them for a few minutes.
Yeah. Long day, packed into the four hours we have after the school bus drops him at my door.
Then I read about Daniel Corby. The idea that it would "unjust to let him continue living" makes me want to run screaming into the night. Unjust to allow another person to continue to live? Why?
Oh, right. Because this four-year-old was autistic. {*insert ugly word of choice here*}
I selected the particular article to link to about it because when I linked, there were no comments yet. And I didn't want there to be comments, because when you go to ones with comments, you run screaming into the night to jump off a cliff. I don't care what resources you do or don't have, what culture you are part of, or what society thinks of you. There is no justification for taking another innocent human life. To take a life that is trusting you to protect it? What, you think disability is worse than death?
It is shocking how many people do. And not only do they think it is worse than death, they think and firmly believe that people with disabilities are less than human, and deserve death. That people with disabilities have no rights, no feelings, no skills, no purpose, no value. They are less than objects, less than dirt. Some people are more subtle about it than others, but the feeling rises to the surface in ugliness that is so insidious and horrible that it is hard to know what to say or how to fight against it. Our culture, our language has difficulty communicating counter-concepts in a way that makes it clear how wrong and ugly and evil such ideas are, and yet how ingrained they have become. What would I have thought before I had Joey in my life? Sometimes I find it a terrifying thought.
Another exhausting vein of comment is people who complain that people with "high functioning" loved ones have no clue what it is like to have "low functioning" loved ones. I have news for them. The problems are different. Am I lucky to have a child who can speak? Yes. Even when he is screaming at me, "I hate you! You hate me! Just kill me now!" and beating on my arm so hard I worry that come day he might break it? Yeah- different problems. But dismissing my point of view in discussing the murder of a child just because he is autistic, simply because my child is "higher functioning" that yours? That is low. Very. Low.
I've been fortunate in being able to spend more time this year in Joey's classroom, and volunteering for several of the special ed kindergartens this year. I've seen a good range of "functioning." I am still convinced that several students would be able to "function" better if they were given more understanding and people "listened" to them better, instead of imposing their own ideas and wants upon the kids. I have seen a range of problems, issues, challenges- and strengths, gifts, and hard work- but each of these kids, each of these families, is unique, meeting their challenges and lives with varying degrees of grace and success. Special needs means special efforts, no matter what the challenges or the strengths. Judging another family because their child is "more disabled" or "less disabled" is just another way of dismissing someone else's hard work and challenges. It is assuming you know more about that other person's life and experience than you do.
And none of those challenges justifies murdering a child. Period.
Monday, April 02, 2012
Happy World Autism Day!
Today, we are celebrating my Joey and all our autistic friends, and their wonderful ways of seeing the world and sharing it with us!
I think World Autism Day is a great idea. When I started this blog oh-so-long-ago, it was mostly because I didn't want other parents to feel as lost, confused, and afraid as we did when we discovered that all those quirks Joey had meant he was having trouble navigating the world. We had just learned one of many important lessons in our lives: that autism and disability aren't scary. Joey is who he is, and we love him no matter what labels are used to describe him. In other words, there might be reason to get prepared, to be concerned, to think and research and collaborate... but there was nothing to fear.
Far too many parents are left to make decisions in the face of the fear of the unknown. They are handed a diagnosis, smacked with the idea that their child has more challenges before him or her than those parents might have expected, and no information for how to deal with the news, or to help their child.
We are also on the brink of another challenge: discussing with Joey what autism is, and what it means. Although we don't hide Joey's autism- not even from him- that doesn't necessarily means he understands it. At the end of our IEP meeting today (how's THAT for celebrating World Autism Day?) we were already started to discuss strategies for middle school. We have a year to prepare. Getting Joey to understand himself so he can be better prepared to self-advocate and help us help him is part of that important transition process to the world of middle school (a world that presents special challenges to everyone, autistic or otherwise).
One of the ways we prepare is to read about our friends who have older children, who are themselves going through these transitions and changes, and sharing parenting experiences with other parents. We coming into a moment where it may be useful for Joey to form his own understanding of himself and the part autism plays in who he is, possibly through connecting with other autistic people. We don't know how much of his self-identity will include autism, if any; but sharing experiences with others who have an inkling of how you think makes a huge difference- a lesson I remember from my own middle school and high school years.
So we are glad today to join in the celebration of our friends, our family, all those who understand or want to understand Joey and how he experiences the world. Without autism, Joey would not be Joey. We love Joey.
Friday, March 30, 2012
Tuesday, March 27, 2012
On/Off Switch: Anxiety's Funny Ways
We have been having some hard days. There are lots of changes going on in Joey's life, and change is not our friend. So honestly, when we had a dentist appointment on Monday that required me to pick him up from school, I wasn't surprised to hear he had a bad day. He had been anxious about the appointment when I put him on the bus. Specials (art) had been shaky. He bolted at lunch when there was some confusion about his lunch money account and was initially denied milk. Not just a run-to-safety bolt, a blind-panic bolt, made worse by folks who don't yet understand you have to block him and distract him with a person he trusts while you block the door, rather than chasing him (and scaring him more). He was clearly anxious as I got him to the car and went to get Andy; repeating comfort phrases and air-writing.
To make things even worse, we are not in our proper car; my van is being worked on, so we are in the small car. The good thing about the small car is that the back doors have child locks. The bad thing is that the windows do not.
On our way to the dentist, Joey insisted on putting his hands out the window. This may seem harmless, but it is very dangerous, and we were coming to a point in the ride where he could have gotten hurt- so I asked him to roll up his window.
Silly me.
The world instantly stopped turning, swirled through space, and crashed on Route 1. Screaming ensued. I tried to reach back and roll the window up myself, to have my hand slammed against the crank by his knee. Ouch. I had to pull over to try, as the light turned green, and was greeted with more screaming and now he was hitting my arm while slamming my hand with his knee. I got the window up. He instantly rolled it back down. We had three rounds of this. Explaining the danger? Useless. Offering token reward? Useless. Raising my voice? Oh, totally wrong. Total meltdown. But the window was now up, and he was still in his seatbelt, so I got the car back in drive and made it on time for our dentist appointment.
Joey stomped in before me, and announced to all and sundry that his mother did not respect him anymore, and he hated her. Also, that his mother should stop hitting him, because it was mean. I sat down with Andy and managed not to cry.
Then, out popped Joey's favorite hygienist. It is a huge credit to the staff at our dentist office that everyone was being just as sweet as could be, and taking the whole situation very lightly. They are kind of used to Joey. But there was positive giggling when this lady popped out with a cheerful, "Joey Guyton! It's your turn!" and it was like a switch had been flipped.
Joey grinned. He stopped yelling and stomping. He said, "Hello! How are you? I am fine! I am happy to see you!" and went on back to get his teeth cleaned as if it were a much-anticipated treat, calm and smiley as you please. He emerged half an hour later with a big smile and very clean teeth, as if nothing had ever been amiss.
Some days, there is nothing to fear but fear itself.
To make things even worse, we are not in our proper car; my van is being worked on, so we are in the small car. The good thing about the small car is that the back doors have child locks. The bad thing is that the windows do not.
On our way to the dentist, Joey insisted on putting his hands out the window. This may seem harmless, but it is very dangerous, and we were coming to a point in the ride where he could have gotten hurt- so I asked him to roll up his window.
Silly me.
The world instantly stopped turning, swirled through space, and crashed on Route 1. Screaming ensued. I tried to reach back and roll the window up myself, to have my hand slammed against the crank by his knee. Ouch. I had to pull over to try, as the light turned green, and was greeted with more screaming and now he was hitting my arm while slamming my hand with his knee. I got the window up. He instantly rolled it back down. We had three rounds of this. Explaining the danger? Useless. Offering token reward? Useless. Raising my voice? Oh, totally wrong. Total meltdown. But the window was now up, and he was still in his seatbelt, so I got the car back in drive and made it on time for our dentist appointment.
Joey stomped in before me, and announced to all and sundry that his mother did not respect him anymore, and he hated her. Also, that his mother should stop hitting him, because it was mean. I sat down with Andy and managed not to cry.
Then, out popped Joey's favorite hygienist. It is a huge credit to the staff at our dentist office that everyone was being just as sweet as could be, and taking the whole situation very lightly. They are kind of used to Joey. But there was positive giggling when this lady popped out with a cheerful, "Joey Guyton! It's your turn!" and it was like a switch had been flipped.
Joey grinned. He stopped yelling and stomping. He said, "Hello! How are you? I am fine! I am happy to see you!" and went on back to get his teeth cleaned as if it were a much-anticipated treat, calm and smiley as you please. He emerged half an hour later with a big smile and very clean teeth, as if nothing had ever been amiss.
Some days, there is nothing to fear but fear itself.
Friday, March 23, 2012
Ryan Hunts My Bolter
Yeah. It's been one of those days. And I think I'm out of wine.
Need some laughter? Go see what else Ryan Gosling is up to in the special needs world by checking out Sunday's Ryan Gosling Week 7.
Wednesday, March 21, 2012
A Peanut Butter Sandwich
A miracle has occurred at my house. Not a big, holy hannah there is a saint living here kind a miracle. No... one of those small, beautiful little miracles that really reminds you that every minute is a miracle, and you should celebrate each one by hugs and smooches. You know, the kind that really matter.
I was grading exams, when Joey comes into the den with a big grin on his face and what appears to be a sandwich in his hand. With the pride of a boy who has just conquered the known universe, he announces, "Mommy! I made a peanut butter sandwich!" His first peanut butter sandwich, all by himself, start to finish. Then he took a big, beautiful bite. Then he let me take a picture.
In case you don't see the miracle in this, let me outline what it means to make a sandwich:
1. Sequencing. Take out the bread, get out the peanut butter, spread the peanut butter, put the sandwich together, put away the peanut butter and close up the bread. I could get into finer steps of the sequencing required, but you get the point. Sequencing is something we always have trouble with here. Yes, he can turn the key and get out the door no problem, but doing something like making a sandwich? Way too many steps... until now.
2. Hand control. Ever watch a little kid try to spread peanut butter? The bread is usually unrecognizable by the end, or you have this very large lump of peanut butter, or both. It takes a huge amount of control to spread anything with a knife, especially something as stiff as peanut butter from the fridge. Controlling the pressure exerted as you move the peanut butter across the bread is something you may not even think about, but was impossible for Joey... until now.
3. Bilateral coordination and crossing midline. Ever try to do that spreading with one hand? To make a peanut butter sandwich, you usually have to hold the bread with one hand and spread with the other. This requires coordination, and an ability to cross your midline while you hold that bread in place. Joey has limitations in his ability to cross midline, which results in poor bilateral coordination. Holding something in one hand and manipulating it with the other with any real accuracy is something he struggled with.. until now.
Now, he can make himself a peanut butter sandwich. That boy rocks.
Sunday, March 18, 2012
Friday, March 16, 2012
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