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
Tuesday, March 13, 2012
What Andy Sees
So we had our meeting with the vision folks. My best summation of our discoveries is, holy crap, no wonder he hates school. They keep telling him to do stuff he can't see!
To give you an approximation, from the experience I was presented at our meeting, I have created the image below. Now, this is a still image. Andy's eyes move, just as your probably do, as he tries to focus and re-focus. So on top of this shattered and doubling effect, image the image is constantly moving, slightly at the outside, downright swirmy-wormy in the center, and you'll get just a glimpse at how Andy sees his schoolwork, or that page you are trying to force him to read.
Got a headache? He gets them, a lot. And now we are very, very sure why. Vision therapy, here we come.
Monday, March 12, 2012
When Ignorance is Deadly
I know, you wanted a nice, happy post today. You ain't gettin' one. Sorry.
I've been following the information about George Hodgins, a 22-year-old man who was murdered by his mother last week. George Hodgins was autistic.
I have been struck by the comments that follow many of the news items. Not just the outpouring of sympathy for Elizabeth Hodgins, but the complete lack of sympathy for George Hodgins. The blaming of "lack of service" and the call for family support may seem a natural reaction to many people- indeed, it must, as many of the comments steer in that direction; but is it really the appropriate reaction? What about talking about support for autistic people? For people in general? What about the support for the victim in this case? And folks, the victim is not George Hodgins' mother. The victim here was primarily GEORGE HODGINS.
When I see comments like, "well, all parents of kids with autism think about killing them," the magma rises before my eyes. I mean, seriously? Holy crap. I have never thought of killing Joey. Never. When such comments are followed up with "Any parent telling you differently is lying," I do think of violence. Not against my son.
But you know who I worry about first? No my Joey, who even now is gaining skills in self-advocacy, who is able to speak up in his own way. By the time he leaves school, I have solid grounds to hope he will be able to self-advocate effectively and live independently.
I think of Max and Charlie and Jack, the boys of my best friend who cannot speak for themselves. I am convinced that there is more going on in those heads than anyone gives those boys credit for, and primarily because they cannot speak. They are boys who are severely disabled. They may never work jobs, they may never talk; but does that mean they have no value? Sadly, to many people, they believe these boys have no value. Of course, they have also never met Max, Charlie, or Jack, or anyone like them- or if they have, they dismissed those people out-of-hand, instead of taking the time and effort to know them and let them work the magic of changing their lives and creating the understanding that is their value, the way they give back to our society- with infectious smiles, personality, and a real understanding of what it means to be human.
Max, Charlie, and Jack are people. Just like you. Just like me. We may be vastly different in many, many, ways, but in this we are in common: we are all human. We are all people. These lives have intrinsic value in the miracle of existing. Until you meet them, with an understanding that they are people- reall, full-fledged, absolutely whole people- you cannot fully appreciate their value, because our society is so convinced that they have none. They spread that idea to the very base of our youth and experience. Shake it off.
I will not speak for my friend directly, but I strongly suspect she has never thought of murdering them, no matter how "high maintenance", "low functioning", or "easily irritated" her boys might be.
George Hodgins died because his mother valued his life so little, saw it only through the desperation of not giving him full value of being a person. He had been out of his program for around three months, and the program had adult service available. This is not a story of lack of services. This is a story of a young man whose life was cut short, and stolen from him. No excuse, no justification, nothing that we can design or imagine to justify her action in killing her son can change this fact, that she chose to murder another human being, a life of value, and rob us all of that life, and rob George Hodgins of his life. He was a loved, cherished young man, with friends and family who loved him and valued him, he was a young man who loved and cherished and thought and breathed and lived, and now he is gone.
Autism is not happening to me. Yes, my life is not what I planned, and I gave up certain paths and dreams to help Joey and to help Andy in ways that people with typical children simply cannot fathom. I have a different life, different plans, different dreams. Seriously, what life goes as planned? And though I think about the lack of services and supports, the problem is not that there is lack of services and supports for me, there is a lack of these things for Joey. I want his life to be as happy and fulfilling and joyful as it can be, with the opportunities to enjoy living that other people have. I'm a parent, after all. I might have to fight harder for it, and get less sleep along the way, and maybe my working life isn't typical, but that's life. I have never thought of stealing it from Joey. To insist I have is a really stupid thing to say- a hateful thing to say.
I wish there was some way to get through thick skulls that this news is terribly painful, and it is painful enough without people saying stupid, hateful things. We have a family out in California in pain. They have lost two family members in a sudden and senseless way. Two people are gone, for really no reason at all. IF you want to make it a discussion, let's talk about the issues of services for disabled people, for support of people with disabilities, and the idea of valuing them as human beings, and the sad fact that all too often, society dismisses people with disabilities as being not-people, or half-people, instead of just people. Let's be working to change that, so fewer people like George Hodgins will have their lives stolen from them.
I've been following the information about George Hodgins, a 22-year-old man who was murdered by his mother last week. George Hodgins was autistic.
I have been struck by the comments that follow many of the news items. Not just the outpouring of sympathy for Elizabeth Hodgins, but the complete lack of sympathy for George Hodgins. The blaming of "lack of service" and the call for family support may seem a natural reaction to many people- indeed, it must, as many of the comments steer in that direction; but is it really the appropriate reaction? What about talking about support for autistic people? For people in general? What about the support for the victim in this case? And folks, the victim is not George Hodgins' mother. The victim here was primarily GEORGE HODGINS.
When I see comments like, "well, all parents of kids with autism think about killing them," the magma rises before my eyes. I mean, seriously? Holy crap. I have never thought of killing Joey. Never. When such comments are followed up with "Any parent telling you differently is lying," I do think of violence. Not against my son.
But you know who I worry about first? No my Joey, who even now is gaining skills in self-advocacy, who is able to speak up in his own way. By the time he leaves school, I have solid grounds to hope he will be able to self-advocate effectively and live independently.
I think of Max and Charlie and Jack, the boys of my best friend who cannot speak for themselves. I am convinced that there is more going on in those heads than anyone gives those boys credit for, and primarily because they cannot speak. They are boys who are severely disabled. They may never work jobs, they may never talk; but does that mean they have no value? Sadly, to many people, they believe these boys have no value. Of course, they have also never met Max, Charlie, or Jack, or anyone like them- or if they have, they dismissed those people out-of-hand, instead of taking the time and effort to know them and let them work the magic of changing their lives and creating the understanding that is their value, the way they give back to our society- with infectious smiles, personality, and a real understanding of what it means to be human.
Max, Charlie, and Jack are people. Just like you. Just like me. We may be vastly different in many, many, ways, but in this we are in common: we are all human. We are all people. These lives have intrinsic value in the miracle of existing. Until you meet them, with an understanding that they are people- reall, full-fledged, absolutely whole people- you cannot fully appreciate their value, because our society is so convinced that they have none. They spread that idea to the very base of our youth and experience. Shake it off.
I will not speak for my friend directly, but I strongly suspect she has never thought of murdering them, no matter how "high maintenance", "low functioning", or "easily irritated" her boys might be.
George Hodgins died because his mother valued his life so little, saw it only through the desperation of not giving him full value of being a person. He had been out of his program for around three months, and the program had adult service available. This is not a story of lack of services. This is a story of a young man whose life was cut short, and stolen from him. No excuse, no justification, nothing that we can design or imagine to justify her action in killing her son can change this fact, that she chose to murder another human being, a life of value, and rob us all of that life, and rob George Hodgins of his life. He was a loved, cherished young man, with friends and family who loved him and valued him, he was a young man who loved and cherished and thought and breathed and lived, and now he is gone.
Autism is not happening to me. Yes, my life is not what I planned, and I gave up certain paths and dreams to help Joey and to help Andy in ways that people with typical children simply cannot fathom. I have a different life, different plans, different dreams. Seriously, what life goes as planned? And though I think about the lack of services and supports, the problem is not that there is lack of services and supports for me, there is a lack of these things for Joey. I want his life to be as happy and fulfilling and joyful as it can be, with the opportunities to enjoy living that other people have. I'm a parent, after all. I might have to fight harder for it, and get less sleep along the way, and maybe my working life isn't typical, but that's life. I have never thought of stealing it from Joey. To insist I have is a really stupid thing to say- a hateful thing to say.
I wish there was some way to get through thick skulls that this news is terribly painful, and it is painful enough without people saying stupid, hateful things. We have a family out in California in pain. They have lost two family members in a sudden and senseless way. Two people are gone, for really no reason at all. IF you want to make it a discussion, let's talk about the issues of services for disabled people, for support of people with disabilities, and the idea of valuing them as human beings, and the sad fact that all too often, society dismisses people with disabilities as being not-people, or half-people, instead of just people. Let's be working to change that, so fewer people like George Hodgins will have their lives stolen from them.
Saturday, March 10, 2012
Life With Andy
So in the swirl of life, special needs, IEPs, and spring springing boing boing boing, we are discovering that among Andy's issues, the child can't see. His eyes do not converge to focus. We'll get to see what it looks like Monday (there is some confusion about whether it is THIS Monday or NEXT Monday, but it's coming), but in the meantime, its been explained to us that he basically can't see anything in a strip about 12 inches wide, six inches to either side of the middle. You know, where you would look to do things like read. Or write. Or, well, anything in front of you. He can't focus there.
We have no idea how he has trained himself to cope with this issue, but he has. After all, it is the way he has always seen, and people expected him to be able to read and write. So he learned to do it. As far as we can figure, he uses a lot of peripheral vision and approximating based on the blurry mess that is in front of him. No wonder he gets so frustrated with reading an writing, though! Apparently, he has gotten through so well because he is a clever little fellow.
The answer will be vision therapy, which will basically reprogram his brain and his eyes so that they work together and converge properly. After that, he will need to be completely retaught to read and write. The good news is that his frustration level will go down, so we should see some alleviation of attention deficits- then he can channel all his awesome energy levels into relearning these skills, and getting back to speed at school.
We now have his IEP in place. It was a little odd putting together the powerpoint, because it looked eerily like the one we made for kindergarden, when we were told all these issues did not require an IEP. Same issues. Just two years later, with a new label- "dysgraphia." You know, if they had listened to me two years ago, and looked into this properly, we wouldn't be needing services now. But that's now water escaped under the bridge, I can't take it back. Here we begin.
We have no idea how he has trained himself to cope with this issue, but he has. After all, it is the way he has always seen, and people expected him to be able to read and write. So he learned to do it. As far as we can figure, he uses a lot of peripheral vision and approximating based on the blurry mess that is in front of him. No wonder he gets so frustrated with reading an writing, though! Apparently, he has gotten through so well because he is a clever little fellow.
The answer will be vision therapy, which will basically reprogram his brain and his eyes so that they work together and converge properly. After that, he will need to be completely retaught to read and write. The good news is that his frustration level will go down, so we should see some alleviation of attention deficits- then he can channel all his awesome energy levels into relearning these skills, and getting back to speed at school.
We now have his IEP in place. It was a little odd putting together the powerpoint, because it looked eerily like the one we made for kindergarden, when we were told all these issues did not require an IEP. Same issues. Just two years later, with a new label- "dysgraphia." You know, if they had listened to me two years ago, and looked into this properly, we wouldn't be needing services now. But that's now water escaped under the bridge, I can't take it back. Here we begin.
Thursday, March 08, 2012
Long Term Plans
I posted my Goslin meme early, because I didn't think I'd be around my computer with my brain on straight long enough to post it on time. Then I got smacked in the face with yet another report of despair dragging a defenseless autistic young man to his death at the hands of his primary care giver: his mother. It is the kind of story, the way it is being currently presented, that makes me cringe.
There are certain details that make me downright red in the face. The young man had been in a day program with an adult component, and the mother pulled him from it 2-3 months ago. Why? And when she had trouble getting him into another program, why didn't she contact the old center? We need more information there. Why was he pulled without having another place to go set up? That's about as wise as quitting your job without another lined up when you live paycheck-to-paycheck, then wondering why you can't pay your rent. Was there a problem at the center? Had she tried to get him in the adult service and been denied? What happened there? It doesn't make sense. Then to break down in only 2-3 months of care? There is something wrong there, too. I know lots of folks with severely disabled kids who do the day in-day out thing for years before they even start pulling their hair out. Again, not enough information. Was she completely unprepared for the responsibility and effort? Was his behavior particularly challenging? The descriptions of the young man do not suggest that, but we simply do not know. (And challenging behavior is still no reason to kill someone.)
And in the end, who has the right to pull out a gun and kill another human being, for any reason? Call me cold, but the whole murder-suicide thing? I'm not very sympathetic to the murderer. It is one thing to take yourself out- that is tragic enough, and serious enough. I have very definite thoughts about suicide, and I am with those who say people do not "commit suicide"; it is more appropriate to talk of someone being "lost to suicide." To take someone out with you? You are moving into a realm beyond any reason. Obviously, when you are in a state where you are suicidal, you are already not in a "typical" rational state. It is bad enough to lose someone to suicide. To lose your family to suicide and to murder at once? My brain goes scrambled-eggs just trying to wrap it around such a concept. You never have the right to kill anyone, unless they are about to kill you. And I mean directly. The whole thing makes no sense. We lost two people in this incident: a young man who was doing his best to live his life, and his mother, who decided to end both lives for reasons and purposes unknown to us.
But it is something that sets me thinking, as I watch Joey and think about his upcoming IEPs and his needs and progress and "current level of performance" etc etc etc. There is much talk about kids "aging out" at 21- but this is only if it is decided that the school is still supposed to be supporting your child with educational service after age 18. With kids like Joey, who are academically on grade level or beyond, it is a much harder fight to keep them in the educational system beyond the age of 18, when their typical peers are graduating. And either way, what happens to Joey after graduation, if he is not able to live independently (yet)?
Yeah, I haven't gotten much sleep lately. Thanks.
Most of my plans and counterplans and back-up plans consider this possibility. What if Joey cannot go out on his own yet? Or, since we have no clue what the future holds, ever? Am I ready for him to stay with us forever? We aren't talking about the kid who never gets it together to move out of mom and dad's basement (though that is also a possibility- for either child- you never know). I'm talking about the possibility of Joey needing extra support, and enough of it that putting him in his own apartment would not be a good option. What other options might be out there? Am I ready for him to stay here?
I don't know too many parents who have adult children or adult loved ones with need for support to the point that living independently is a limited option, or not one. I have a friend who started a group home for her adult daughter- she had the resources to do that, and it has worked out nicely. I have a colleague who surprised me one day when my Joey was first diagnosed by revealing they had an adult child with neuro-developmental disabilities living at home (and that their adult child brought much joy to the family! Thank you for sharing that part, too!) We have a neighbor with a younger adult child who has a job with a local company and still lives with them, and that seems to be working out well for them. Would it then be a disaster if Joey remained here with me?
Hello- no. I love Joey, I love being with my Joey, and we are very very very fortunate that 1. he is Joey- a delightful and wonderful human being and 2. he functions currently at a level where the issue of supervision is not as dire as many other families I know. Yes, I have to keep the doors locked, and we have our wild days, but for the most part, Joey is Joey, and he lives in a world that fits comfortably within the family scope and understanding, just like all the other family members, no problem. In fact, if Andy develops needs that meant he couldn't live independently, I'm ready, thinking about how we would all live here together as four full adults; but I know the possibility is higher with Joey than with Andy.
Then, what happens if something happens to me? Or more correctly, when something happens to me, and to JoeyAndyDad?
And that is when the planning goes into overdrive.
Joey is nine years old. We're over halfway to 18. We don't know what the world will look like in nine years. More like 8 years. What plans can I be considering and implementing now, to be sure when Joey ages out and I prove to be mortal like everyone else, Joey will still be able to enjoy his life and live it? That he will have resources to recover from the loss and move on? A better plan than "Andy will have to take care of that"? Yes, its time to start thinking about what balls might need to be rolling to prepare for the future. after all, they aren't little long- and once you are an adult, you are an adult for a long time (we all hope). We all know adult services are seriously lacking, everywhere.
Seriously lacking. Or non-existant.
So it is time to get started, since I doubt I will be winning the lottery anytime soon to start my disability school and family center. Though I admit to buying tickets. After all, that money goes to fund the services we already use.
There are certain details that make me downright red in the face. The young man had been in a day program with an adult component, and the mother pulled him from it 2-3 months ago. Why? And when she had trouble getting him into another program, why didn't she contact the old center? We need more information there. Why was he pulled without having another place to go set up? That's about as wise as quitting your job without another lined up when you live paycheck-to-paycheck, then wondering why you can't pay your rent. Was there a problem at the center? Had she tried to get him in the adult service and been denied? What happened there? It doesn't make sense. Then to break down in only 2-3 months of care? There is something wrong there, too. I know lots of folks with severely disabled kids who do the day in-day out thing for years before they even start pulling their hair out. Again, not enough information. Was she completely unprepared for the responsibility and effort? Was his behavior particularly challenging? The descriptions of the young man do not suggest that, but we simply do not know. (And challenging behavior is still no reason to kill someone.)
And in the end, who has the right to pull out a gun and kill another human being, for any reason? Call me cold, but the whole murder-suicide thing? I'm not very sympathetic to the murderer. It is one thing to take yourself out- that is tragic enough, and serious enough. I have very definite thoughts about suicide, and I am with those who say people do not "commit suicide"; it is more appropriate to talk of someone being "lost to suicide." To take someone out with you? You are moving into a realm beyond any reason. Obviously, when you are in a state where you are suicidal, you are already not in a "typical" rational state. It is bad enough to lose someone to suicide. To lose your family to suicide and to murder at once? My brain goes scrambled-eggs just trying to wrap it around such a concept. You never have the right to kill anyone, unless they are about to kill you. And I mean directly. The whole thing makes no sense. We lost two people in this incident: a young man who was doing his best to live his life, and his mother, who decided to end both lives for reasons and purposes unknown to us.
But it is something that sets me thinking, as I watch Joey and think about his upcoming IEPs and his needs and progress and "current level of performance" etc etc etc. There is much talk about kids "aging out" at 21- but this is only if it is decided that the school is still supposed to be supporting your child with educational service after age 18. With kids like Joey, who are academically on grade level or beyond, it is a much harder fight to keep them in the educational system beyond the age of 18, when their typical peers are graduating. And either way, what happens to Joey after graduation, if he is not able to live independently (yet)?
Yeah, I haven't gotten much sleep lately. Thanks.
Most of my plans and counterplans and back-up plans consider this possibility. What if Joey cannot go out on his own yet? Or, since we have no clue what the future holds, ever? Am I ready for him to stay with us forever? We aren't talking about the kid who never gets it together to move out of mom and dad's basement (though that is also a possibility- for either child- you never know). I'm talking about the possibility of Joey needing extra support, and enough of it that putting him in his own apartment would not be a good option. What other options might be out there? Am I ready for him to stay here?
I don't know too many parents who have adult children or adult loved ones with need for support to the point that living independently is a limited option, or not one. I have a friend who started a group home for her adult daughter- she had the resources to do that, and it has worked out nicely. I have a colleague who surprised me one day when my Joey was first diagnosed by revealing they had an adult child with neuro-developmental disabilities living at home (and that their adult child brought much joy to the family! Thank you for sharing that part, too!) We have a neighbor with a younger adult child who has a job with a local company and still lives with them, and that seems to be working out well for them. Would it then be a disaster if Joey remained here with me?
Hello- no. I love Joey, I love being with my Joey, and we are very very very fortunate that 1. he is Joey- a delightful and wonderful human being and 2. he functions currently at a level where the issue of supervision is not as dire as many other families I know. Yes, I have to keep the doors locked, and we have our wild days, but for the most part, Joey is Joey, and he lives in a world that fits comfortably within the family scope and understanding, just like all the other family members, no problem. In fact, if Andy develops needs that meant he couldn't live independently, I'm ready, thinking about how we would all live here together as four full adults; but I know the possibility is higher with Joey than with Andy.
Then, what happens if something happens to me? Or more correctly, when something happens to me, and to JoeyAndyDad?
And that is when the planning goes into overdrive.
Joey is nine years old. We're over halfway to 18. We don't know what the world will look like in nine years. More like 8 years. What plans can I be considering and implementing now, to be sure when Joey ages out and I prove to be mortal like everyone else, Joey will still be able to enjoy his life and live it? That he will have resources to recover from the loss and move on? A better plan than "Andy will have to take care of that"? Yes, its time to start thinking about what balls might need to be rolling to prepare for the future. after all, they aren't little long- and once you are an adult, you are an adult for a long time (we all hope). We all know adult services are seriously lacking, everywhere.
Seriously lacking. Or non-existant.
So it is time to get started, since I doubt I will be winning the lottery anytime soon to start my disability school and family center. Though I admit to buying tickets. After all, that money goes to fund the services we already use.
Wednesday, March 07, 2012
Spread the Word
It happens all too often when I am out in public. The grocery store. The park. A museum. A bank. I don't even know why I bother to go into Walmart. The r-bombs, dropped everywhere, all around, no thought to anything, or anyone. Going online, its like a blitzkrieg. That's so KABLAMO! Really? You are so WHAM! Come on, don't be such a KAPOW!
Gotta love the responses when you say something, too. Did you know you can offend someone, even when you "don't mean to"? That something can be hurtful, even if you "don't mean it that way"? That referring to yourself by a derogatory term does not make it less derogatory and insulting?
Then there are the folks who mean it just as they say it, and have no qualms with telling you that people with disabilities don't have the right to be educated, or accommodated, or even to live. Waste of breath, waste of resources, waste of time. After all, what do kids in special ed have to give back to society, anyway, after we spend so much money on them? Why not just let kids with severe physical issues just, well, die? Going through life seeing red is really bad for my blood pressure. And I already have enough issues with my blood pressure, thank you very much. The sheer disrespect the use of this term spreads and reveals is enough to make one run screaming into the night, without people actually trying to defend it. And people who really think people with disabilities are a waste of space? They forget that it could easily... easily... be their kid. Their sibling. Their parents. Them.
And the "oh, I don't mean Joey" excuse? Yes, you do. Because that term is tossed at him all the time, used to refer to him, whispered behind his back and snickered at him from across the room all the time. So yes, when you are using this term, you are referring to my son.
And you know the real kicker? Joey doesn't even have intellectual disabilities. It isn't a term just about intellectual disability. It is a term used to degrade and dehumanize anyone who is seen as different, who talks a little differently, acts a little differently, is interested in different things or in different ways. It dismisses everything about people that is positive, constructive, and human. Joey's talents in math, in reading, in visual perception? Out the window. Because retards don't have strengths. That is how that term is being used, understood, bandied about, and wielded. Useless, ugly, stupid, irritating, waste of time, waste of space, contemptible, odd, crappy, disgusting, slow, insignificant. That is what you mean. That is what you say about my sons when you use this word.
Please. Stop.
Monday, March 05, 2012
Message Boards are not good for my blood pressure
Tired of reading jerkface comments on news stories about ADHD and autism from people who scream that one or their other (or both) are "overdiagnosed" or don't exist. I also get tired of people who stomp their feet over the interventions used to help kids learn to cope, focus, and self-regulate. I get so tired of people who chose to remain ignorant.
It can only be by choice at this point. The extensive awareness campaigns for autism and ADHD in the popular media should at least by now have gotten through the thickest skulls that there are people out there who are different, and who may need extra support- therapies, medications, whatever. But no. Idiots and selfish, ignorant numbskulls remain.
Trying to speak reasonably to such people can be an exercise in blood pressure control and deep breathing. After all, the majority of them are not reasonable themselves. They send you to websites that are so obviously hate-mongering snake-oil-selling conspiracy-theory gibberish that you wonder how they are getting through life without a room full of diet pills and turnip twaddlers. Or maybe they haven't.
Here's the truth, folks: ASD and ADHD are both very real, and they affect both children and adults every day. Not everyone who are ASD or ADHD require medication, but some do. Occupational therapy, speech therapy, physical therapy... there are lots of interventions out there, far more than 30 years ago when I was a kid, and I thank God for it. Because seriously, that question, "where were those kids thirty years ago?" is plain annoying. Where were they? ASD kids were labeled weird and mentally retarded (using the term of the time), and all too often locked away, sent to special schools or self-contained rooms, or bullied out of school altogether. ADHD kids were labeled disruptive, often became angry, and as they grew older, often fell to self-medication through illegal substances or alcohol abuse. Growing up believing they were lazy and stupid, many resorted to extremes of behavior, and even suicide. Yeah- those kids.
Today, those kids can be supported and be functioning participants- very valuable participants- of classrooms and communities.
I really wish these people would go volunteer for their local special ed classrooms. They would learn SO MUCH... including some lessons on courage, perseverance, and humility.
It can only be by choice at this point. The extensive awareness campaigns for autism and ADHD in the popular media should at least by now have gotten through the thickest skulls that there are people out there who are different, and who may need extra support- therapies, medications, whatever. But no. Idiots and selfish, ignorant numbskulls remain.
Trying to speak reasonably to such people can be an exercise in blood pressure control and deep breathing. After all, the majority of them are not reasonable themselves. They send you to websites that are so obviously hate-mongering snake-oil-selling conspiracy-theory gibberish that you wonder how they are getting through life without a room full of diet pills and turnip twaddlers. Or maybe they haven't.
Here's the truth, folks: ASD and ADHD are both very real, and they affect both children and adults every day. Not everyone who are ASD or ADHD require medication, but some do. Occupational therapy, speech therapy, physical therapy... there are lots of interventions out there, far more than 30 years ago when I was a kid, and I thank God for it. Because seriously, that question, "where were those kids thirty years ago?" is plain annoying. Where were they? ASD kids were labeled weird and mentally retarded (using the term of the time), and all too often locked away, sent to special schools or self-contained rooms, or bullied out of school altogether. ADHD kids were labeled disruptive, often became angry, and as they grew older, often fell to self-medication through illegal substances or alcohol abuse. Growing up believing they were lazy and stupid, many resorted to extremes of behavior, and even suicide. Yeah- those kids.
Today, those kids can be supported and be functioning participants- very valuable participants- of classrooms and communities.
I really wish these people would go volunteer for their local special ed classrooms. They would learn SO MUCH... including some lessons on courage, perseverance, and humility.
Friday, March 02, 2012
For The Love of Sign
On Fridays, instead of spending the day cleaning my house and napping, I've been packing my favorite books into a bag- or my new awesome large-sized books (thank you homeschooling mom somewhere in my area who is selling off your stuff for younger kids so I can buy it up and use it)- and heading over to the schools. In the morning, I read and teach sign language to two of the special needs kindergardens and the classroom that has the autism resource kids and the tier 3 self-contained kids in it (it covers all three grades). And we all have an awesome time. Then i grab some lunch, and head over to Joey's classroom* to teach sign language.
In Joey's room, when I am teaching, I have Joey as my awesome Sign Helper. He knows most of the signs, even if he doesn't do a lot of signing, and he loves being the "teacher." He also loves looking up signs on my phone when someone asks for a sign I don't know. And looking up signs he fancies. He's getting good at looking stuff up.
Today, we did "outside signs" because most of the afternoon group are boys between 9 and 11, and I could show them signs for sports. I've shown them before, but memory is not the forte of most of these kids, for various reasons. So we did football, soccer, baseball, basketball. Then we needed hockey. I don't know hockey, and it wasn't in my faithful app. So I showed Joey how to use the Safari app on my phone, and we googled it, came up with it, and went on.
Next thing I know, he's uploading videos of the classroom to You Tube! How does he DO that? (How did he get my password???)
Then he starts teaching his fellow students all sorts of new signs, looking them up and announcing "This is hamburger!" (shows sign) "This is cereal!" (shows sign) "This is bird! Angry... bird!" (shows signs). "Ticket! This is the sign for ticket!" (he shows the sign) Of course, tickets are what they get to save up for rewards. So everyone starts giggling and getting out of focus.
"Careful!" I say, "or I'll show you the sign for 'homework!'"
"Homework!" Joey calls out gleefully. "Home... work!" (he does the signs) "Homework!" And dutifully (and happily), his classmates learn the sign. Now that is love of signing.
*I asked Andy if he would like me to come his classroom, and I got a horrified "No!"
In Joey's room, when I am teaching, I have Joey as my awesome Sign Helper. He knows most of the signs, even if he doesn't do a lot of signing, and he loves being the "teacher." He also loves looking up signs on my phone when someone asks for a sign I don't know. And looking up signs he fancies. He's getting good at looking stuff up.
Today, we did "outside signs" because most of the afternoon group are boys between 9 and 11, and I could show them signs for sports. I've shown them before, but memory is not the forte of most of these kids, for various reasons. So we did football, soccer, baseball, basketball. Then we needed hockey. I don't know hockey, and it wasn't in my faithful app. So I showed Joey how to use the Safari app on my phone, and we googled it, came up with it, and went on.
Next thing I know, he's uploading videos of the classroom to You Tube! How does he DO that? (How did he get my password???)
Then he starts teaching his fellow students all sorts of new signs, looking them up and announcing "This is hamburger!" (shows sign) "This is cereal!" (shows sign) "This is bird! Angry... bird!" (shows signs). "Ticket! This is the sign for ticket!" (he shows the sign) Of course, tickets are what they get to save up for rewards. So everyone starts giggling and getting out of focus.
"Careful!" I say, "or I'll show you the sign for 'homework!'"
"Homework!" Joey calls out gleefully. "Home... work!" (he does the signs) "Homework!" And dutifully (and happily), his classmates learn the sign. Now that is love of signing.
*I asked Andy if he would like me to come his classroom, and I got a horrified "No!"
Monday, February 27, 2012
Spring is here... Time for IEPs!
Yes, my hyacinths are blooming, I have daffodils opening, the rose bush buds are leafing out (shoot- I didn't get the pruning done!), it must be time to be thinking about IEPs- that map to Joey's future, based upon his present. All those thoughts, and goals, and concerns, and everything that have been mulling about must come together to think of the next step. SO what is Joey's present? What does my crystal ball say about his future?
As I once told Joey's teachers, in some ways, Joey is 15. He is SO ready for algebra. We need to get him moving into the abstract, so he can understand what the numbers are doing on the paper- but he is not so happy with long division, he can already cut through it to see the answer. He want to test Mom and Dad in his boundaries of being an individual, exploring scripts that include words he has found contain the power of immediate attention (you know, the ones not appropriate for school. Or family-friendly blogs.) He definitely likes having his "girlfriends" and really misses the friend that moved away, his "wife."
In some ways, Joey is still 5. He wants his cuddles. He makes friends with everyone. Adults are authority, no matter how they treat him, and he is happy to share hugs even with ones he doesn't particularly like. He wants his own way, and though he has learned to take turns and wait some, he's not always good at it. He still struggles with social interactions, such as maintaining conversations or keeping up with dynamic pretend play.
And in some ways, this is on par with being almost ten years old- an age where the little kid fades and the young adult begins, but isn't here yet. Not that I am that familiar with typical ten-year-olds, mind you. But in thinking what I have seen and read about them, I know that Joey definitely isn't one.
As far as I can tell, typical ten-year-old boys can handle things that Joey definitely cannot. They can build treeforts, ride two-wheeler bikes unsupervised through a neighborhood, can care for their own possessions, and often take on chores of the house like filling a dishwasher and taking out the trash with fair independence. Ten-year-olds around here seem to be able to play in the front of their homes without much supervision, even go to visit neighbors on their own. Perhaps the story of the ten-year-old on the New York subway is a bit extreme, but my mom remembers riding the bus in Baltimore when she was five- by herself. Ten-year-olds are able to think of things to do for themselves in their free time, even without a TV or a computer.
Joey cannot do these things. I wouldn't dream of letting him out of my locked gates without my eyes upon him. Every chore has to be supervised, structured, clearly delineated. Joey, build his own treefort? Leaving the coordination that such a feat would require aside, could he figure out a book about how to build one, and follow through? Watching Joey trying to hold a conversation is also something that, in the IEP season, strikes at my very core. Other kids talk and play so easily. There is a clear back-and-forth, a rhythm of communication even as ideas change, a coming to consensus and moving through the play, that Joey cannot do. He's getting better. But he's not like the other 10-year-olds, and boy do they know it. The constant unpredictability quickly overwhelms Joey, he can't keep up with the constant shift and change. He can't follow the way the other boys communicate by glancing at each other. He know they are communicating; but he can't decipher the code.
What does this mean for Joey's present? What does it mean for his future? As we take one step nearer to the dreaded Middle School Years, what can be done to mitigate the challenges that Joey faces in his uphill climb to being an independent adult?
In many kids' shows, there is an episode about Secret Clubs. Kids, especially as they get towards Middle School, are into segregating themselves into little groups, or cliques, of other kids that make them feel- well, a part of an exclusive little group. For some kids, this is not a good thing; for others, it is a way to connect with other kids going through life with similar ideas and goals, and to be more comfortable as they grow. There are secret handshakes, secret codes, secret meetings, secret games. In all of these shows, the point is that these clubs often make others feel left out, and that being inclusive is more fun. ITs a lovely little lesson on thinking of others, the merits of diversity and inclusion, and just plain differences between being nice and being mean.
For Joey, the whole of society seems like a secret club, and he is the one not invited. He doesn't have the secret handshake, the secret code, and isn't invited to the secret meetings. And with adult life, it gets to be a huge problem when those secret handshakes lead to the secret games called "employment." And yes, I worry that he may never really learn to deal with the dynamics of learning the secret social code, even if we can show him what the code means. It is like someone who speaks a foreign language- a native speaker can almost always tell the difference. There are idioms that a foreigner just never really picks up on, uses, or understands. After all, Joey will always be Joey. The question is, will the secret club let him in? How lovely would it be if we all kept those kids' shows at heart, and remember to be kind and nice, and not mean?
But such is not the way of the world, and more's the pity. In fact, most of society defends its secret club vigorously, and has no problem declaring it openly that my son may never be included, should never be included, and is a waste of time, breath, and money to try to fight for his inclusion. Others are more subtle, going through the motions but often denying support, or expecting the motions to be enough without the intention and understanding. There are also those who say they are inclusive, but their actions prove otherwise- and unfortunately, those people are all too often in positions of power and authority, including in school systems. They often are very vocal about being inclusive in public, while doing and saying things in meetings and behind closed doors that clearly speak otherwise. And sometimes, you have to plan IEPs with these people. It isn't pretty.
Spring is here, and it is time to think what goals would be reasonable for Joey in trying to get him to the next step. At this point, I am thinking in terms of making Middle School as easy as possible for him; but I must not forget the greater goal of adult independence and self-advocacy, goals that most parents assume as granted. Sometimes I wonder how wise that is- but perhaps that is the subject of a another blog post.
As I once told Joey's teachers, in some ways, Joey is 15. He is SO ready for algebra. We need to get him moving into the abstract, so he can understand what the numbers are doing on the paper- but he is not so happy with long division, he can already cut through it to see the answer. He want to test Mom and Dad in his boundaries of being an individual, exploring scripts that include words he has found contain the power of immediate attention (you know, the ones not appropriate for school. Or family-friendly blogs.) He definitely likes having his "girlfriends" and really misses the friend that moved away, his "wife."
In some ways, Joey is still 5. He wants his cuddles. He makes friends with everyone. Adults are authority, no matter how they treat him, and he is happy to share hugs even with ones he doesn't particularly like. He wants his own way, and though he has learned to take turns and wait some, he's not always good at it. He still struggles with social interactions, such as maintaining conversations or keeping up with dynamic pretend play.
And in some ways, this is on par with being almost ten years old- an age where the little kid fades and the young adult begins, but isn't here yet. Not that I am that familiar with typical ten-year-olds, mind you. But in thinking what I have seen and read about them, I know that Joey definitely isn't one.
As far as I can tell, typical ten-year-old boys can handle things that Joey definitely cannot. They can build treeforts, ride two-wheeler bikes unsupervised through a neighborhood, can care for their own possessions, and often take on chores of the house like filling a dishwasher and taking out the trash with fair independence. Ten-year-olds around here seem to be able to play in the front of their homes without much supervision, even go to visit neighbors on their own. Perhaps the story of the ten-year-old on the New York subway is a bit extreme, but my mom remembers riding the bus in Baltimore when she was five- by herself. Ten-year-olds are able to think of things to do for themselves in their free time, even without a TV or a computer.
Joey cannot do these things. I wouldn't dream of letting him out of my locked gates without my eyes upon him. Every chore has to be supervised, structured, clearly delineated. Joey, build his own treefort? Leaving the coordination that such a feat would require aside, could he figure out a book about how to build one, and follow through? Watching Joey trying to hold a conversation is also something that, in the IEP season, strikes at my very core. Other kids talk and play so easily. There is a clear back-and-forth, a rhythm of communication even as ideas change, a coming to consensus and moving through the play, that Joey cannot do. He's getting better. But he's not like the other 10-year-olds, and boy do they know it. The constant unpredictability quickly overwhelms Joey, he can't keep up with the constant shift and change. He can't follow the way the other boys communicate by glancing at each other. He know they are communicating; but he can't decipher the code.
What does this mean for Joey's present? What does it mean for his future? As we take one step nearer to the dreaded Middle School Years, what can be done to mitigate the challenges that Joey faces in his uphill climb to being an independent adult?
In many kids' shows, there is an episode about Secret Clubs. Kids, especially as they get towards Middle School, are into segregating themselves into little groups, or cliques, of other kids that make them feel- well, a part of an exclusive little group. For some kids, this is not a good thing; for others, it is a way to connect with other kids going through life with similar ideas and goals, and to be more comfortable as they grow. There are secret handshakes, secret codes, secret meetings, secret games. In all of these shows, the point is that these clubs often make others feel left out, and that being inclusive is more fun. ITs a lovely little lesson on thinking of others, the merits of diversity and inclusion, and just plain differences between being nice and being mean.
For Joey, the whole of society seems like a secret club, and he is the one not invited. He doesn't have the secret handshake, the secret code, and isn't invited to the secret meetings. And with adult life, it gets to be a huge problem when those secret handshakes lead to the secret games called "employment." And yes, I worry that he may never really learn to deal with the dynamics of learning the secret social code, even if we can show him what the code means. It is like someone who speaks a foreign language- a native speaker can almost always tell the difference. There are idioms that a foreigner just never really picks up on, uses, or understands. After all, Joey will always be Joey. The question is, will the secret club let him in? How lovely would it be if we all kept those kids' shows at heart, and remember to be kind and nice, and not mean?
But such is not the way of the world, and more's the pity. In fact, most of society defends its secret club vigorously, and has no problem declaring it openly that my son may never be included, should never be included, and is a waste of time, breath, and money to try to fight for his inclusion. Others are more subtle, going through the motions but often denying support, or expecting the motions to be enough without the intention and understanding. There are also those who say they are inclusive, but their actions prove otherwise- and unfortunately, those people are all too often in positions of power and authority, including in school systems. They often are very vocal about being inclusive in public, while doing and saying things in meetings and behind closed doors that clearly speak otherwise. And sometimes, you have to plan IEPs with these people. It isn't pretty.
Spring is here, and it is time to think what goals would be reasonable for Joey in trying to get him to the next step. At this point, I am thinking in terms of making Middle School as easy as possible for him; but I must not forget the greater goal of adult independence and self-advocacy, goals that most parents assume as granted. Sometimes I wonder how wise that is- but perhaps that is the subject of a another blog post.
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