"You're driving too fast, Mom. The speed limit is 45. You are going 52. Speed limits are made to keep us safe."
Joey has hit the age when he realizes that driving is cool. It lets you go places. It puts you in control. The driver's seat has always been a fascination, but now it is generalizing to the idea of growing up and gaining freedoms.
We are driving to the dump. My mom doesn't have trash collection, so Joey is with me to do a Trash Run, where he can help me with the bags (tossing them into the big compaction hopper is awesome heavy work) and watch the trash be compacted away. It's also a Ride Alone With Mom, which is a treat; he gets to sit up front with me and ride.
"I'll never drive," he says suddenly. His voice loses the mechanical quality at its edges for a moment, a pause in the general driving script to make an observation. But I know this new tone, too; and I suddenly feel that turn in my stomach that always accompanies it.
"Of course you will, Buddy," I assure him. It is the expected response, and I want him to feel the familiarity, the cheerfulness, the casual air of my response.
"No," the grief in the word could be a whole conversation, but he goes on. "My age limit is twelve and under. I will never be a teenager. I don't have a birthday."
It's a tone that makes you want to leap out of your soul and hold him, until all that pain he is expressing goes away. I have never figured out why he is sad, or why it comes out when it does.
Instead of holding to the tack and spiraling into the abyss the conversation teeters upon, I decide on something else.
"There are three basics of driving," I put in my lecture-voice, "The two pedals- this is the gas, this is the brake; and the steering wheel." He stops, his head tips to one side, he looks at my feet.
"The gas pedal makes it go faster. The brake pedal makes it stop," he chants.
"One thing to remember about a car- it is made to move. So you don't even need to press the gas pedal to make it go- you just turn it on, and it will move forward. You press the gas pedal to go faster. To go slower..."
"You hit the brake. Not too hard!"
"Not necessarily," I grin, throwing in a little wrench to get him thinking. "All you have to do is stop pressing the gas pedal. See?" I take my foot off the gas, and we slow down. "You use the brake when you have to stop faster than just letting up on the gas lets you."
"I'll use both my feet to drive," he announces, still look at my feet.
"No, actually, you just use one foot," I observe, stepping on the gas for a moment to keep us moving. "When I want to stop, I just move my foot from the gas to the brake," I clarify, and demonstrate.
For a moment, he is fascinated. Then I blow his mind by showing him that after a turn, you just let the steering wheel go, you don't turn it back. He stares at my hands a moment, frowns, the script returning.
"The speed limit is 45. You are going too fast."
"Well, that's one thing you will have to learn about driving," I sigh. "Sometimes the rules bend. I know how to drive this road. If you are out on the Interstate, the speed limit is 65. But if everyone around you is going 70, you don't want to be a traffic hazard- you need to go 70, too."
This totally Does Not Compute.
"But the speed limit is the rule," he spits out in dismay, a phrase I have never heard him use before. In the face of the idea of rules that bend, but not break, I glimpse the black-and-white thinking that dominates Joey's world, in a way and with an intensity I have never really seen before. Perhaps as he gets older, he is expected to understand more about shades of grey, and so it is now more obvious.
He returns to the more comforting gas=go, brake=stop. Then he returns to never getting any older. No birthday. Twelve is his age limit. Its a conversation that I find terrifying, simply from the frankness with which he presents the idea of not ever being a teenager. That he will never learn to drive. That he will never have a birthday.
My stomach lurches. My eyes burn. I show him turning the wheel again. He is distracted again. Now he chats merrily about owning a truck when he grows up, so he can "haul my things easier."
And I search for my heart in the fog of grey.
Friday, January 02, 2015
Thursday, January 01, 2015
Wednesday, December 10, 2014
Soundified
When Joey was little, he came up with phrases that made him feel happy. Very often, by the time he started repeating them, the words were lost in a pool of sound, but they made him feel better, even cracked him up. It has been a while since we have heard one of these happy scripts, where he would repeat it just for the feel of the words in his mouth, and giggle hysterically.
Today, we have two.
"Steal Olaf's nose and feed it to Sven!" he chimed at me this morning. This was a vast improvement from yesterday, when he woke up grumpy and let me have it double-barreled from the get-go. The hysterics followed. I can still hear the fuzzy edges of the words, a sort of stuffy sound that I now recognize as the apraxia- but also a cue that the meaning of the words don't matter. It's the sound, the cadence of the words, the sharp rhythm that entertains him. The words no longer go to mush; this is a Frozen reference. Where the exact phrase came from, I don't know; always before, these phrases are ones he had heard, and became enchanted with the sounds. Certainly, it is a script, but the source this exact line is lost to me. Part of me hopes he has made it up himself, heard it in his head.
Scripting has become a problem most of the time- both of word and action. Stealing items as a "joke." Repeating "grounded" over and over- referring to punishments. Negativity, self-denigration, and depression have been a running theme. Profane language has become commonplace, and trying to correct it, vain. When I hear about police using force against people simply because the people used bad language towards them, my stomach does somersaults of fear. He bolted form the house twice this past week- what if a police officer had found him in that state?
I welcome the return of soundification. To celebrate, I turned on Frozen for him this afternoon. Then I gleefully listed to him soundify and giggle for an hour.
Music. Sweet music.
Today, we have two.
"Steal Olaf's nose and feed it to Sven!" he chimed at me this morning. This was a vast improvement from yesterday, when he woke up grumpy and let me have it double-barreled from the get-go. The hysterics followed. I can still hear the fuzzy edges of the words, a sort of stuffy sound that I now recognize as the apraxia- but also a cue that the meaning of the words don't matter. It's the sound, the cadence of the words, the sharp rhythm that entertains him. The words no longer go to mush; this is a Frozen reference. Where the exact phrase came from, I don't know; always before, these phrases are ones he had heard, and became enchanted with the sounds. Certainly, it is a script, but the source this exact line is lost to me. Part of me hopes he has made it up himself, heard it in his head.
Scripting has become a problem most of the time- both of word and action. Stealing items as a "joke." Repeating "grounded" over and over- referring to punishments. Negativity, self-denigration, and depression have been a running theme. Profane language has become commonplace, and trying to correct it, vain. When I hear about police using force against people simply because the people used bad language towards them, my stomach does somersaults of fear. He bolted form the house twice this past week- what if a police officer had found him in that state?
I welcome the return of soundification. To celebrate, I turned on Frozen for him this afternoon. Then I gleefully listed to him soundify and giggle for an hour.
Music. Sweet music.
Saturday, November 15, 2014
A Study in Boy Face
What difference does it make to have support, appropriate teaching, appropriate education settings and levels? What difference does individualization and understanding make?
It makes for these.
Tuesday, October 21, 2014
Attitude
Well, here it is, October. The seasons change, the light slants through the sky at different angle, the air chills, the leaves fall, and Joey goes bazonkers. I am pretty sure the season change is part of the problem for him, because we have the same thing happen in the spring. When Joey gets off-kilter with the change of season, he can't help it. He feels it, and his frustration goes up, he goes into severe silly moods, the swings of mood can be dramatic. He doesn't like it any more than anybody else, but he also has no where to go with it.
Add onto that puberty. Then, a new school, and problems with regulation associated with change and increased academic demands. Plus, now that we think he is starting to trust the people around him, he is starting to try to process and express a lot of feelings, frustrations, and experiences for which he has no words. Yeah, I think you might go a little nutty, too.
This is the moment that tries a school's soul. For the last few years, that soul has come up wanting. And when the school comes up wanting, it is not longer a safe space- and the spiral goes rapidly into the vortex from there. When he starts acting out and expressing fear and anger from years of bullying, frustration, and difficulty communicating, how do you respond? Do you lecture him, suspend him from class, punish him? Most school settings do. What have you taught him when you react in a way that is punishing, negative, hard, cold?
That he can't trust you. He can't rely on your help, because you aren't going to help. You are going to punish, and just expect him to swallow all that horrible down. He learns you want him to shut up and go away.
We had our first blow up at school. What was the attitude of the new school?
Let's make sure he is safe. Let's give him ways to tell us what he needs. Let's make sure he has space to calm down, decompress, de-escalate. Let's teach him some new coping mechanisms. Let's find out what he is feeling, and help him express it. Let's hire some psychiatric help so he gets some support and therapy for what he is experiencing and feeling.
No panic. No suspension. No "he's got to have negative consequences for this!" No "I have to keep my staff safe!" with the implication of, "your kid is dangerous!" They shifted the positive reinforcement back to shorter time expectations, to give him time and support to learn new strategies, process, and re-adjust. The gave him time to calm down, then engaged him in a discussion of what choices would be good choices when he is feeling overwhelmed, scared, sad, confused, or even super-silly. We talked about things he finds calming, and how to make sure he has access to things like pictures of his cats, squish balls, and favorite games.
How's that for a whole new world?
And the result? He came home happy as a clam, saying he had a good day at school, and talking about Mom visiting and playing games with his classmate and teachers. He's still happy to go back to school and give it another try, every morning. Today wasn't a good day, but tomorrow is a new day.
He still feels safe and loved. That is the attitude he needs to succeed.
Add onto that puberty. Then, a new school, and problems with regulation associated with change and increased academic demands. Plus, now that we think he is starting to trust the people around him, he is starting to try to process and express a lot of feelings, frustrations, and experiences for which he has no words. Yeah, I think you might go a little nutty, too.
This is the moment that tries a school's soul. For the last few years, that soul has come up wanting. And when the school comes up wanting, it is not longer a safe space- and the spiral goes rapidly into the vortex from there. When he starts acting out and expressing fear and anger from years of bullying, frustration, and difficulty communicating, how do you respond? Do you lecture him, suspend him from class, punish him? Most school settings do. What have you taught him when you react in a way that is punishing, negative, hard, cold?
That he can't trust you. He can't rely on your help, because you aren't going to help. You are going to punish, and just expect him to swallow all that horrible down. He learns you want him to shut up and go away.
We had our first blow up at school. What was the attitude of the new school?
Let's make sure he is safe. Let's give him ways to tell us what he needs. Let's make sure he has space to calm down, decompress, de-escalate. Let's teach him some new coping mechanisms. Let's find out what he is feeling, and help him express it. Let's hire some psychiatric help so he gets some support and therapy for what he is experiencing and feeling.
No panic. No suspension. No "he's got to have negative consequences for this!" No "I have to keep my staff safe!" with the implication of, "your kid is dangerous!" They shifted the positive reinforcement back to shorter time expectations, to give him time and support to learn new strategies, process, and re-adjust. The gave him time to calm down, then engaged him in a discussion of what choices would be good choices when he is feeling overwhelmed, scared, sad, confused, or even super-silly. We talked about things he finds calming, and how to make sure he has access to things like pictures of his cats, squish balls, and favorite games.
How's that for a whole new world?
And the result? He came home happy as a clam, saying he had a good day at school, and talking about Mom visiting and playing games with his classmate and teachers. He's still happy to go back to school and give it another try, every morning. Today wasn't a good day, but tomorrow is a new day.
He still feels safe and loved. That is the attitude he needs to succeed.
Saturday, October 18, 2014
Our Latest Adventure
As if I have lots of extra time for writing blog posts- evidenced by the lack thereof here- I have started a new blog for Andy's homeschooling and our experience with it. The Learning Squirrel will be chronicling our Adventures in Educating. Here's hoping it will be awesome.
Monday, September 15, 2014
The Elephant in Room
I did a little experiment this week. I commented on a story about Kelli Stapleton. For those who don't follow news, Kelli Stapleton attempted a murder-suicide of herself and her 14-year-old autistic daughter, Issy. She was well-known in the parenting circles, and a friend to many people I know. Like many such stories, this one has gathered a very specific rhetoric, the "for Kelli" crowd and the "anti Kelli" crowd. That rhetoric has become so strong and loud, it has drowned out any other ideas or voices, and everyone is expected to pick a side and then be torn to shreds by the other.
It isn't a very useful conversation.
Murder is not acceptable. Attempted murder is just murder that fortunately wasn't successful, so as far as I am concerned for these situations, the same thing. Murder was the intent. You don't kill people. I don't really care what excuses you try to give for that as a defense. It isn't one. The fact that I even have to say this shows how loud and strong this "for Kelli/anti Kelli" rhetoric has become.
What I found interesting in my experiment is the complete lack of interest in talking about the broader issues, about anything constructive, or about Issy. Every time, the conversation was turned back to "Kelli bad!" or "You're making excuses for Kelli!" I don't want to talk about Kelli at all. Plenty of people are already doing that.
I want to talk about Issy.
The subnote to the "for Kelli" contingent is often a call for "services for the family" and "support for the family." This often seems to be mistaken by the anti Kelli contingent as "support for the parents," when it appears what is meant is something more generalized as services.
Support is actually more than just services. Support is about acceptance, community, and feeling loved and welcome. That is what is needed.
However, what I suggested- and was choked out by the rhetoric- was that we don't need this primarily for the family, and not having it for the family is not an excuse to murder anyone. The person who needs support is the person with the disability. Issy needed that support. She needs that support. She didn't get it.
All too often, persons in our communities who are different, who have disabilities, don't get that support. You send them off to whatever is available for as long as you can afford, and hope. There is little mechanism for intervening and advocating for them if that is needed to keep them safe. Not just the Stapletons, people- in general. We need to talk about getting people help.
Getting that support in place, and in the community, is constructive and supportive long before we get to murdering them. Reduce the exposure of vulnerable people to abuse, violence, and murder, and you might find fewer are victims of abuse, violence, and murder. Reduce their frustration and help them learn and grow, treat them with respect, and you might find less frustration and instability in the first place, all around. Give the support, and the world becomes manageable.
Put the focus on the people who really need the help and support, and the other issues fade back. Improve the lives of people who need a little extra care and service, and their lives actually improve. It's an amazing thing.
But no one wants to talk about it.
And lest you think the static is just in the Stapleton case, check out the other cases in the news. If you want to see extremes in making excuses, check the case of the murder of Jude Mirra. Check out the rhetoric in the murder of Robbie Robinson (you have to search his mother's name, Angie Robinson, to find the stories... how sad is that?) Look at the story of Randle Barrow. Think of Alex Spourdalakis. These are just cases involving autism- but autistic people are not alone in this, they are not the only people being murdered, and their disability blamed. Where were the communities? The advocates? The interventions? The understanding? Read the way the articles are written- they feed into the pro-murderer/anti-murderer rhetoric. The murdered people are often barely mentioned, their full names subsumed under that of their killer.
Support isn't just services- there needs to be an entire social mountain moved.
We need to think about how we support people and think about each other. We need to learn what acceptance really is. We need to start with ourselves, because you can control the way you think, you can take responsibility for yourself. As we tell our kids and ourselves all the time: your are responsible for your body and your words. Learn how. Start now.
It isn't a very useful conversation.
Murder is not acceptable. Attempted murder is just murder that fortunately wasn't successful, so as far as I am concerned for these situations, the same thing. Murder was the intent. You don't kill people. I don't really care what excuses you try to give for that as a defense. It isn't one. The fact that I even have to say this shows how loud and strong this "for Kelli/anti Kelli" rhetoric has become.
What I found interesting in my experiment is the complete lack of interest in talking about the broader issues, about anything constructive, or about Issy. Every time, the conversation was turned back to "Kelli bad!" or "You're making excuses for Kelli!" I don't want to talk about Kelli at all. Plenty of people are already doing that.
I want to talk about Issy.
The subnote to the "for Kelli" contingent is often a call for "services for the family" and "support for the family." This often seems to be mistaken by the anti Kelli contingent as "support for the parents," when it appears what is meant is something more generalized as services.
Support is actually more than just services. Support is about acceptance, community, and feeling loved and welcome. That is what is needed.
However, what I suggested- and was choked out by the rhetoric- was that we don't need this primarily for the family, and not having it for the family is not an excuse to murder anyone. The person who needs support is the person with the disability. Issy needed that support. She needs that support. She didn't get it.
All too often, persons in our communities who are different, who have disabilities, don't get that support. You send them off to whatever is available for as long as you can afford, and hope. There is little mechanism for intervening and advocating for them if that is needed to keep them safe. Not just the Stapletons, people- in general. We need to talk about getting people help.
Getting that support in place, and in the community, is constructive and supportive long before we get to murdering them. Reduce the exposure of vulnerable people to abuse, violence, and murder, and you might find fewer are victims of abuse, violence, and murder. Reduce their frustration and help them learn and grow, treat them with respect, and you might find less frustration and instability in the first place, all around. Give the support, and the world becomes manageable.
Put the focus on the people who really need the help and support, and the other issues fade back. Improve the lives of people who need a little extra care and service, and their lives actually improve. It's an amazing thing.
But no one wants to talk about it.
And lest you think the static is just in the Stapleton case, check out the other cases in the news. If you want to see extremes in making excuses, check the case of the murder of Jude Mirra. Check out the rhetoric in the murder of Robbie Robinson (you have to search his mother's name, Angie Robinson, to find the stories... how sad is that?) Look at the story of Randle Barrow. Think of Alex Spourdalakis. These are just cases involving autism- but autistic people are not alone in this, they are not the only people being murdered, and their disability blamed. Where were the communities? The advocates? The interventions? The understanding? Read the way the articles are written- they feed into the pro-murderer/anti-murderer rhetoric. The murdered people are often barely mentioned, their full names subsumed under that of their killer.
Support isn't just services- there needs to be an entire social mountain moved.
We need to think about how we support people and think about each other. We need to learn what acceptance really is. We need to start with ourselves, because you can control the way you think, you can take responsibility for yourself. As we tell our kids and ourselves all the time: your are responsible for your body and your words. Learn how. Start now.
Friday, September 12, 2014
Empathy
We have two new fur babies. Joey has been so excited about getting his very own cat, especially in the throes of still missing Luna. We finally brought them home.
At long last, we found our kitties, and Joey was looking forward to seeing her home safe when he came home from school. Andy and I picked them up from the shelter, and took them directly to our vet (do not pass Go, do not collect $200), and had our vet look them over top to tail. Lily was very good, letting her nails be clipped and the vet handle her. She got a clean bill, though she had some tartar on her teeth that we removed. Marshmallow had evidence of an earmite problem, but no mites. Her ears had not been properly cleaned from it, however, so she has a little yeast in the ear folds, very uncomfy. Our vet cleaned them really well, and treated them so the yeast will go away. Neither had any sign of fleas. Then we gave them both a monthly Bug Treatment (fleas, heartworm, mites, etc all covered by the treatment), just in case and just because its a good idea, and home we went to introduce them to Ellora.
Marshmallow has proven a bold beauty, looking over the house and already interacting with her new people. The only thing she's not totally approved of is the food, because hey, she's a cat. Fancy Feast just ain't fancy enough for her (or familiar enough for her). She jumps up and says hello, and has been very interested in Ellora.
Ellora wants Nothing To Do With Her. She comes over and stares at me, with the look of, "Mom, what did you do? There are whipper-snappers in my HOUSE!" I believe she is plotting my demise.
So Joey came home to Marshmallow out and about. But where was his Lily?
We found her. She has found a little space under a kitchen cabinet, and has tucked herself in there. The shelter said it took her a couple of days to calm down there. We expect the same here, if not a little longer. Everything new, her world torn up again. She was a turn-in; a family deliberately gave her up. The papers said she "didn't get along with the other cats." It also said she was in a house with five other cats and three dogs. The shelter had no problems with her and other cats, but noticed she hates loud and sudden noises- so we suspect she was terrified of the dogs. No wonder she's anxious. This is her third home, and she is smart to be wary. She's overwhelmed by the changes.
Joey was bitterly disappointed. He wanted to be able to pet his cat, and feed her, and show how well he could take care of her. He began to perseverate, to spiral into the abyss of disappointment and grief. All afternoon, he was so sad. At first we couldn't find her at all, then we found her tucked under the cabinet. I got her to nibble some food for me, but otherwise, she was not ready to come out to say hello. Joey was devastated. He sat downstairs, trying to coax her out. He managed to get her out for a few minutes by tempting her with treats, but then she ran back to her hole. He was beside himself, thinking he was doing something wrong. We kept assuring him that she would come out, he just needed to give her time. We tried to get him to think about how he felt when he was upset and scared, and get him to understand the cat was feeling this way. He wasn't buying it.
We finally got him calmed down enough to get him settled into his room for bed. I came out a little later to check on him. He was in his bed, reading his dictionary, surrounded by his stuffed Mario and Frozen characters.
"Are you OK?" I asked, and he returned the standard "um-hm" of "I know you want an answer but I don't want to deal with you."
"Do you want me to sit with you a while?" I offered, as this is sometimes something he likes when upset.
"No, I need my alone time."
"Oh," I nodded, giving him a smile. "Well, I just want you to know what a good job you are doing, taking care of Lily. Sometimes, taking care of her means leaving her alone for a little while."
"Like me telling you I want my alone time?" he brightened.
"Exactly."
By George, I think he's got it.
 |
| This is Joey's kitty, Lily. She looks suspiciously like Luna. |
 |
| This is Andy's kitty, Marshmallow. She is totally not shy. At. All. And she approves of the changes in her fortunes. |
Marshmallow has proven a bold beauty, looking over the house and already interacting with her new people. The only thing she's not totally approved of is the food, because hey, she's a cat. Fancy Feast just ain't fancy enough for her (or familiar enough for her). She jumps up and says hello, and has been very interested in Ellora.
Ellora wants Nothing To Do With Her. She comes over and stares at me, with the look of, "Mom, what did you do? There are whipper-snappers in my HOUSE!" I believe she is plotting my demise.
So Joey came home to Marshmallow out and about. But where was his Lily?
We found her. She has found a little space under a kitchen cabinet, and has tucked herself in there. The shelter said it took her a couple of days to calm down there. We expect the same here, if not a little longer. Everything new, her world torn up again. She was a turn-in; a family deliberately gave her up. The papers said she "didn't get along with the other cats." It also said she was in a house with five other cats and three dogs. The shelter had no problems with her and other cats, but noticed she hates loud and sudden noises- so we suspect she was terrified of the dogs. No wonder she's anxious. This is her third home, and she is smart to be wary. She's overwhelmed by the changes.
Joey was bitterly disappointed. He wanted to be able to pet his cat, and feed her, and show how well he could take care of her. He began to perseverate, to spiral into the abyss of disappointment and grief. All afternoon, he was so sad. At first we couldn't find her at all, then we found her tucked under the cabinet. I got her to nibble some food for me, but otherwise, she was not ready to come out to say hello. Joey was devastated. He sat downstairs, trying to coax her out. He managed to get her out for a few minutes by tempting her with treats, but then she ran back to her hole. He was beside himself, thinking he was doing something wrong. We kept assuring him that she would come out, he just needed to give her time. We tried to get him to think about how he felt when he was upset and scared, and get him to understand the cat was feeling this way. He wasn't buying it.
We finally got him calmed down enough to get him settled into his room for bed. I came out a little later to check on him. He was in his bed, reading his dictionary, surrounded by his stuffed Mario and Frozen characters.
"Are you OK?" I asked, and he returned the standard "um-hm" of "I know you want an answer but I don't want to deal with you."
"Do you want me to sit with you a while?" I offered, as this is sometimes something he likes when upset.
"No, I need my alone time."
"Oh," I nodded, giving him a smile. "Well, I just want you to know what a good job you are doing, taking care of Lily. Sometimes, taking care of her means leaving her alone for a little while."
"Like me telling you I want my alone time?" he brightened.
"Exactly."
By George, I think he's got it.
Saturday, September 06, 2014
Week One of the Big Changes: Success!
I have to say, one week in... well, half a week, since Joey started school on Wednesday, so that's also when Andy and I started official lessons... and so far, so awesome.
The first week of school for Joey the last few years has always been... well, a disaster, really. This year? His teachers allow hugs. They help him, they guide him, they make it clear what their expectations are and provide him tools to meet them. They are busy teaching him those tools right now. He gets the attention he craves, and his fellow student thinks he's the bee's knees, and doesn't tease or otherwise make fun of him. Into Toy Story and Frozen? No problemo. You like words? Cool, let's look at word roots and definitions. You get the picture.
The result? Happy Boy who wants to get up and go to the school in the morning, two morning in a row, first week. Wow. More spontaneous speech. Telling himself stories that are not just scripts or episodes he's already seen. Half a week in, and I get the feeling that by the end of the year, I may have my Joey on the right track.
School for Andy has been a struggle of tears the last few years, anxiety of bullying from both students and unempathetic teachers. His third grade teachers figured him out. Last year's teachers never did, and I think they just wrote him off as a spoiled over-sensitive brat. Summer has been something of a struggle to get him used to home learning, and finding out interests we can target for interest and pleasure in learning. Saying "learn" around him risked shutdown. Asking him questions risked shutdown. I was getting very worried that this might not work, and then what to do? Sending him back into the hellhole is not an option, to be honest.
We talked. We looked at some materials. We toured the town and the resources for local field trip opportunities. He actually asked to look at some places, to get out and explore some. He asked to see the local museum. We read Ichabod Crane together, set up a game that teaches scientific method, and even did a straightforward math lesson, at a table and very traditional. No, it wasn't all sunshine and roses, but he did it. He showed interest. He demonstrated understanding. I think by Christmas, when his "deschooling" should be complete, we should be able to really get into what he needs to move along. Here in Virginia, he needs to pass an eval at the end of the year (either a portfolio or standardized test), so we will likely need to continue with math lessons in a more traditional way- I'm not really familiar with any other way to teach it- but we have plenty of resources here to make history, science, reading, grammar, writing, arts, etc. relevant and immediate. BY the end of the year, I may have my Andy back on the right track.
Folks, that's starting the year with a Win.
Let's keep up the good vibes.
The first week of school for Joey the last few years has always been... well, a disaster, really. This year? His teachers allow hugs. They help him, they guide him, they make it clear what their expectations are and provide him tools to meet them. They are busy teaching him those tools right now. He gets the attention he craves, and his fellow student thinks he's the bee's knees, and doesn't tease or otherwise make fun of him. Into Toy Story and Frozen? No problemo. You like words? Cool, let's look at word roots and definitions. You get the picture.
The result? Happy Boy who wants to get up and go to the school in the morning, two morning in a row, first week. Wow. More spontaneous speech. Telling himself stories that are not just scripts or episodes he's already seen. Half a week in, and I get the feeling that by the end of the year, I may have my Joey on the right track.
School for Andy has been a struggle of tears the last few years, anxiety of bullying from both students and unempathetic teachers. His third grade teachers figured him out. Last year's teachers never did, and I think they just wrote him off as a spoiled over-sensitive brat. Summer has been something of a struggle to get him used to home learning, and finding out interests we can target for interest and pleasure in learning. Saying "learn" around him risked shutdown. Asking him questions risked shutdown. I was getting very worried that this might not work, and then what to do? Sending him back into the hellhole is not an option, to be honest.
We talked. We looked at some materials. We toured the town and the resources for local field trip opportunities. He actually asked to look at some places, to get out and explore some. He asked to see the local museum. We read Ichabod Crane together, set up a game that teaches scientific method, and even did a straightforward math lesson, at a table and very traditional. No, it wasn't all sunshine and roses, but he did it. He showed interest. He demonstrated understanding. I think by Christmas, when his "deschooling" should be complete, we should be able to really get into what he needs to move along. Here in Virginia, he needs to pass an eval at the end of the year (either a portfolio or standardized test), so we will likely need to continue with math lessons in a more traditional way- I'm not really familiar with any other way to teach it- but we have plenty of resources here to make history, science, reading, grammar, writing, arts, etc. relevant and immediate. BY the end of the year, I may have my Andy back on the right track.
Folks, that's starting the year with a Win.
Let's keep up the good vibes.
Sunday, August 24, 2014
Big Changes
Good news: Joey's school is officially licensed! He is set to start and is in the transition camp now! Can I get a "woo-hoo"?
Joey is going to Stafford Academy, and we are hoping for it to be as awesome, wonderful, supportive, and miraculous as he needs it to be. We have lost a lot of time, and there has been a lot of damage from leaving him in schools that just would not do what he needed them to do: provide an autism-specific classroom with trained autism professionals, and pull out to the mainstream classrooms as he was able to deal with those broader environments. They are doing it right behind us- but that doesn't help us. Now we need MORE support, not less. We have slid back into more and more restrictive environments, but not ones that included, all the time, people trained to deal with autism.
We have learned the hard way that autism is not like ANY other disability when it comes to learning. The uniqueness of the needs, the difference in motivations/reasons for behavior, the needed differences in responding to those needs and behaviors- they are so different from how you address these issues, that putting them in a room with kids with, say, emotional disturbance issues, causes huge problems. Massive, catastrophic anxiety and depression, specifically.
What we also learned- mostly from experience, but also from talking with our friends have actually had to go through these environments and therapies themselves- is that ABA isn't all that and a bucket of crackers. It's a tool (a key tool in working with kids who need to have tasks broken down and "chained" by practicing each part), but it can't be the only one in your box. Sending him to an "ABA school" without a lot of other supports, such as the psychological supports we can't seem to get for love or money, doesn't work well. Our disappointment in the Kennedy Krieger program cannot be overstated.
Stafford Academy is not an ABA school. It is an approach that immerses the kids in occupational therapy methods and interventions, addressing needs for sensory integration, stress management, movement (lots of movement!), and social thinking/skills. It will use Social Thinking in its curriculum, which you all know I love. Using lots of tools in the toolbox, the school provides a entire environment to meet the needs of autistic kids, with small classes so the environment can be individualized and effective for each child. They will be spending time out in the community, and as the kids become ready, they will hook up with local homeschooling groups for learning, community projects, and outings.
Sound awesome? We are hoping it will be. We are going to work hard to make it awesome. Joey needs it to be awesome. We want him to learn how to be happy again- not just in passing, but in his core.
Meanwhile...
Our other big news is Andy is coming home. He has been having trouble with bullying at school for years now, but we had no idea how bad it was. He is so emotionally brittle, and teachers are so not trained to deal with sensory issues that lead to being emotionally brittle, that I believe now the school adults were ignoring the signs of severe bullying- to the point Andy was learning to defend himself from these kids by bullying back. Not what we need.
I spoke to some other parents, and their kids, who were better able to communicate about the situation. One family actually moved out of the city, a decision they partly based on the serious situation in the classroom that no one would address. Apparently, if adults don't see bullying, they don't address it or even believe it is really happening. In a school. How long have these teachers been on planet Earth? Anyway, the reports from these families were far more dire than just knocking things off Andy's desk and a few threats on the bus. There was serious emotional abuse occurring, threats of violence (including sexual violence), racial targeting (we knew about that- Andy was really upset and confused by it), and a lot of things going on "under the adult radar" because it was not just jumping kids on the playground and covering them in bruises. Though we also had some of that going on.
On top of that, not understanding Andy's disability leads to bullying from the adults, both actual and perceived. This past year was particularly harsh in that regard, and the result is a child who loved books who doesn't now want to touch them. We've had a slide back in wanting to write and communicate. He has, in short, not only a lack of interest in learning, but an actual loathing of anything he views "educational." Say "learn" around my child, and you get a scowl. If you can get something from him about it, you are likely to hear the word "worksheets" and "stupid."
Andy has enough stress in his life, to be honest. Being Joey's family takes a lot of work and emotional energy, but it also takes physical energy. School needs to be a supportive, safe environment. He wasn't getting it in this school system.
I have already been doing experiments in his learning style, interests, and ideas. I've been working on putting together my toolbox. We have been deschooling, a process I hope to be through by Christmas. We are now, officially, a homeschooling family.
Talk about being someplace you never dreamed of being.
Wish us luck.
Joey is going to Stafford Academy, and we are hoping for it to be as awesome, wonderful, supportive, and miraculous as he needs it to be. We have lost a lot of time, and there has been a lot of damage from leaving him in schools that just would not do what he needed them to do: provide an autism-specific classroom with trained autism professionals, and pull out to the mainstream classrooms as he was able to deal with those broader environments. They are doing it right behind us- but that doesn't help us. Now we need MORE support, not less. We have slid back into more and more restrictive environments, but not ones that included, all the time, people trained to deal with autism.
We have learned the hard way that autism is not like ANY other disability when it comes to learning. The uniqueness of the needs, the difference in motivations/reasons for behavior, the needed differences in responding to those needs and behaviors- they are so different from how you address these issues, that putting them in a room with kids with, say, emotional disturbance issues, causes huge problems. Massive, catastrophic anxiety and depression, specifically.
What we also learned- mostly from experience, but also from talking with our friends have actually had to go through these environments and therapies themselves- is that ABA isn't all that and a bucket of crackers. It's a tool (a key tool in working with kids who need to have tasks broken down and "chained" by practicing each part), but it can't be the only one in your box. Sending him to an "ABA school" without a lot of other supports, such as the psychological supports we can't seem to get for love or money, doesn't work well. Our disappointment in the Kennedy Krieger program cannot be overstated.
Stafford Academy is not an ABA school. It is an approach that immerses the kids in occupational therapy methods and interventions, addressing needs for sensory integration, stress management, movement (lots of movement!), and social thinking/skills. It will use Social Thinking in its curriculum, which you all know I love. Using lots of tools in the toolbox, the school provides a entire environment to meet the needs of autistic kids, with small classes so the environment can be individualized and effective for each child. They will be spending time out in the community, and as the kids become ready, they will hook up with local homeschooling groups for learning, community projects, and outings.
Sound awesome? We are hoping it will be. We are going to work hard to make it awesome. Joey needs it to be awesome. We want him to learn how to be happy again- not just in passing, but in his core.
Meanwhile...
Our other big news is Andy is coming home. He has been having trouble with bullying at school for years now, but we had no idea how bad it was. He is so emotionally brittle, and teachers are so not trained to deal with sensory issues that lead to being emotionally brittle, that I believe now the school adults were ignoring the signs of severe bullying- to the point Andy was learning to defend himself from these kids by bullying back. Not what we need.
I spoke to some other parents, and their kids, who were better able to communicate about the situation. One family actually moved out of the city, a decision they partly based on the serious situation in the classroom that no one would address. Apparently, if adults don't see bullying, they don't address it or even believe it is really happening. In a school. How long have these teachers been on planet Earth? Anyway, the reports from these families were far more dire than just knocking things off Andy's desk and a few threats on the bus. There was serious emotional abuse occurring, threats of violence (including sexual violence), racial targeting (we knew about that- Andy was really upset and confused by it), and a lot of things going on "under the adult radar" because it was not just jumping kids on the playground and covering them in bruises. Though we also had some of that going on.
On top of that, not understanding Andy's disability leads to bullying from the adults, both actual and perceived. This past year was particularly harsh in that regard, and the result is a child who loved books who doesn't now want to touch them. We've had a slide back in wanting to write and communicate. He has, in short, not only a lack of interest in learning, but an actual loathing of anything he views "educational." Say "learn" around my child, and you get a scowl. If you can get something from him about it, you are likely to hear the word "worksheets" and "stupid."
Andy has enough stress in his life, to be honest. Being Joey's family takes a lot of work and emotional energy, but it also takes physical energy. School needs to be a supportive, safe environment. He wasn't getting it in this school system.
I have already been doing experiments in his learning style, interests, and ideas. I've been working on putting together my toolbox. We have been deschooling, a process I hope to be through by Christmas. We are now, officially, a homeschooling family.
Talk about being someplace you never dreamed of being.
Wish us luck.
Friday, August 08, 2014
The Wild Ride
It's been a weird summer.
Remember back once upon a time when we were going spend our summer in Baltimore getting Joey all this wonderful help and therapy at Kennedy Krieger? It sounded so awesome. 8-10 weeks, and they would help him. We'd get some of the damage from the anxiety and depression mitigated. We were scrambling to figure out how to pay for it, where to stay, how to make it work. We sent back paperwork and held our breath.
We got the call back much later than we were expecting- mid-June, when we were under the impression from the doctor that he was keen for us to get started ASAP. But then we got slammed with one unpleasant truth after another.
The program was an intensive ABA program, with no psychiatric support. It got chopped down from that 8-10 weeks, where I would think even just an ABA program might be at least useful, to 4 weeks, then to 3. Then he was "too high functioning" for the main facility (because he wouldn't need nursing care... of course, they never actually saw him go into a spiral), so they were shipping us to a satellite, where it would be much harder for me to find somewhere to stay. Then, they wouldn't even be targeting the most important self-injury we needed addressed: the self-deprecation and self-harming threats. They might be able to keep him from attacking when he got desperate- but they had nothing for helping him keep from getting desperate.
One thing we have learned in our journey using ABA-based ideas and methods: you can replace a behavior, but you can't control what Joey will replace it with. That's one of the streams that fed our current situation to begin with.
I don't know if saying "no" was the right thing, but I do think we need to consider that "anything is better than nothing" may not be the way to handle support services and therapies. Getting "anything" isn't appropriate. You need to get the right therapies and supports.
I think the doctor already thought I was barmy. Now he's going to think I'm completely off my rocker.
Part of the reason I said "no" was that they came straight out and said they could not address the core issue. It was a big part. But there were other red flags for us. For one, the insurance was going to "cover" it (it was still going to be $1900) under "mental health services." The problem is, "mental health services" was the one thing they said point-blank the program would NOT HAVE. "Neuro-behavioral therapy" is apparently just a slick name for "intensive ABA"- and still ignores the root of the behaviors we are seeing, and need to get help for. I'm glad the insurance was interested in providing some coverage, because ABA is very useful for certain things. However, at Joey's age, without the psychiatric support, it would likely simply add to his depression- another reminder that he's "doing things wrong." Positive behavior supports and social skills/coping/regulation training are all great, but don't do much if you ignore the negativity exploding in my child's mind.
Anxiety and depression are strange mistresses. Kind of like Siamese cats.
Meanwhile...
Taking another strategy, looking to reduce stress and anxiety in Joey's day, we had our Big IEP meeting. It was the one that you have to stare the reality of the situation in the face and admit utter defeat in order to gain the victory your child needs: appropriate services and appropriate placement. After years of regression and struggle, the team had to agree that the current setting wasn't working. Joey starts at a special school on Sept 3, and we are crossing fingers and toes that it will work for him. It will be a small class, and he already knows and likes one of the other students. The approach will be sensory, movement, and OT-oriented, with Social Thinking as part of the curriculum, rather than being ABA-heavy- so they will address the roots of problems, not just the outward crashes. Stopping the spiral to the abyss before Joey goes over the edge just makes a lot more sense to us.
If we can locate psychiatric support, we may yet try the Kennedy Krieger program when a spot opens this fall. Until we have the crucial piece, I don't see the point of setting him up to "practice" being in a meltdown. It's not just about having resources, or services, or professionals, after all. It's all for naught if they aren't the resources, services, and professionals you need.
Remember back once upon a time when we were going spend our summer in Baltimore getting Joey all this wonderful help and therapy at Kennedy Krieger? It sounded so awesome. 8-10 weeks, and they would help him. We'd get some of the damage from the anxiety and depression mitigated. We were scrambling to figure out how to pay for it, where to stay, how to make it work. We sent back paperwork and held our breath.
We got the call back much later than we were expecting- mid-June, when we were under the impression from the doctor that he was keen for us to get started ASAP. But then we got slammed with one unpleasant truth after another.
The program was an intensive ABA program, with no psychiatric support. It got chopped down from that 8-10 weeks, where I would think even just an ABA program might be at least useful, to 4 weeks, then to 3. Then he was "too high functioning" for the main facility (because he wouldn't need nursing care... of course, they never actually saw him go into a spiral), so they were shipping us to a satellite, where it would be much harder for me to find somewhere to stay. Then, they wouldn't even be targeting the most important self-injury we needed addressed: the self-deprecation and self-harming threats. They might be able to keep him from attacking when he got desperate- but they had nothing for helping him keep from getting desperate.
One thing we have learned in our journey using ABA-based ideas and methods: you can replace a behavior, but you can't control what Joey will replace it with. That's one of the streams that fed our current situation to begin with.
I don't know if saying "no" was the right thing, but I do think we need to consider that "anything is better than nothing" may not be the way to handle support services and therapies. Getting "anything" isn't appropriate. You need to get the right therapies and supports.
I think the doctor already thought I was barmy. Now he's going to think I'm completely off my rocker.
Part of the reason I said "no" was that they came straight out and said they could not address the core issue. It was a big part. But there were other red flags for us. For one, the insurance was going to "cover" it (it was still going to be $1900) under "mental health services." The problem is, "mental health services" was the one thing they said point-blank the program would NOT HAVE. "Neuro-behavioral therapy" is apparently just a slick name for "intensive ABA"- and still ignores the root of the behaviors we are seeing, and need to get help for. I'm glad the insurance was interested in providing some coverage, because ABA is very useful for certain things. However, at Joey's age, without the psychiatric support, it would likely simply add to his depression- another reminder that he's "doing things wrong." Positive behavior supports and social skills/coping/regulation training are all great, but don't do much if you ignore the negativity exploding in my child's mind.
Anxiety and depression are strange mistresses. Kind of like Siamese cats.
Meanwhile...
Taking another strategy, looking to reduce stress and anxiety in Joey's day, we had our Big IEP meeting. It was the one that you have to stare the reality of the situation in the face and admit utter defeat in order to gain the victory your child needs: appropriate services and appropriate placement. After years of regression and struggle, the team had to agree that the current setting wasn't working. Joey starts at a special school on Sept 3, and we are crossing fingers and toes that it will work for him. It will be a small class, and he already knows and likes one of the other students. The approach will be sensory, movement, and OT-oriented, with Social Thinking as part of the curriculum, rather than being ABA-heavy- so they will address the roots of problems, not just the outward crashes. Stopping the spiral to the abyss before Joey goes over the edge just makes a lot more sense to us.
If we can locate psychiatric support, we may yet try the Kennedy Krieger program when a spot opens this fall. Until we have the crucial piece, I don't see the point of setting him up to "practice" being in a meltdown. It's not just about having resources, or services, or professionals, after all. It's all for naught if they aren't the resources, services, and professionals you need.
Monday, August 04, 2014
Sunday, August 03, 2014
Monday, June 30, 2014
Who Knows Best
"Hey Mom!" Andy shouts from the door, "can I go with M to the pool?" He already has his swim stuff on. They are headed to the big public pool. Having a friend around the corner is big excitement for Andy, and he is totally enjoying it. We are fabulously lucky. They are awesome people, and they love Joey, too. M's little sister T is particularly fond of Joey, because they seem to talk at the same wavelength, even though she is younger.
"Do you want to go to Big Pool with Andy and M?" I ask Joey, calculating how long it will take me to get into a suit myself, and what would need to be packed to survive an afternoon at a very crowded public pool, instead of the Smaller Pool where we are members.
"No," Joey replies without hesitation, and suddenly settles in front of his computer. This is unexpected reply; I blink, then turn to a crestfallen Andy.
"Well, you can go ahead," I say, to Andy's delighted surprise. After all, I know M's parents are like me- eyes on the children at the pool. Not time for reading or facebooking. Besides, Andy hasn't passed the swim test at the Big Pool for the year, nor has T, so they will all be in the shallow end- all being in the same section makes it easier to watch them at Big Pool. He'll be safe, have fun with his friend, have a relaxing afternoon at the pool. That's a Go.
As the door closes, my brain starts whirring with ideas for engaging Joey for the afternoon. Crafts? Books? Games? He gets up from the computer, disappears upstairs, giving me a few minutes to regroup. I start a plan of action.
He appears, fully dressed for swimming, with towel.
"Let's go to Smaller Pool," he announces, rather than asks. "Not too many people."
It is a victory of self-advocacy that I gladly reward by grabbing my car keys.
"Do you want to go to Big Pool with Andy and M?" I ask Joey, calculating how long it will take me to get into a suit myself, and what would need to be packed to survive an afternoon at a very crowded public pool, instead of the Smaller Pool where we are members.
"No," Joey replies without hesitation, and suddenly settles in front of his computer. This is unexpected reply; I blink, then turn to a crestfallen Andy.
"Well, you can go ahead," I say, to Andy's delighted surprise. After all, I know M's parents are like me- eyes on the children at the pool. Not time for reading or facebooking. Besides, Andy hasn't passed the swim test at the Big Pool for the year, nor has T, so they will all be in the shallow end- all being in the same section makes it easier to watch them at Big Pool. He'll be safe, have fun with his friend, have a relaxing afternoon at the pool. That's a Go.
As the door closes, my brain starts whirring with ideas for engaging Joey for the afternoon. Crafts? Books? Games? He gets up from the computer, disappears upstairs, giving me a few minutes to regroup. I start a plan of action.
He appears, fully dressed for swimming, with towel.
"Let's go to Smaller Pool," he announces, rather than asks. "Not too many people."
It is a victory of self-advocacy that I gladly reward by grabbing my car keys.
Wednesday, June 11, 2014
Positive Reinforcement
Joey has discovered Facebook. No, he doesn't have his own account, he isn't old enough for one. I haven't let him start a side page from my account, either. However, he has figured out that Facebook communicates with people. It's kinda awesome.
It started with photos. I started asking him if it was OK to put photos of him on Facebook. Although the response was almost without exception the "yeah" he gives that makes me wonder if he actually processed what I said, or just gave a vague answer because he knew I had asked a question and expected one, I now suspect he was paying more attention that I was crediting him. This is, unfortunately, not an unusual situation for Joey. I did continue to ask, just in case- and now I am so glad I did.
Then he started asking for me to put photos up, then videos. "Facebook it, Mom!" became a common request. "Let's make a video and put it on Facebook!" And people started "liking" them. Positive feedback is something Joey lives for. So now he asks "how many likes did I get?" Or I will cheer him up by showing him likes to a photo or video.
Now he is dictating status updates. "Mom, I want our friends on Facebook to know..." "You're on Facebook! Say..."
So if you are following me on Facebook, and you see "Joey wants you to know...", rest assured a little man is at my elbow, eagerly awaiting those "Likes." They totally make his day.
It started with photos. I started asking him if it was OK to put photos of him on Facebook. Although the response was almost without exception the "yeah" he gives that makes me wonder if he actually processed what I said, or just gave a vague answer because he knew I had asked a question and expected one, I now suspect he was paying more attention that I was crediting him. This is, unfortunately, not an unusual situation for Joey. I did continue to ask, just in case- and now I am so glad I did.
Then he started asking for me to put photos up, then videos. "Facebook it, Mom!" became a common request. "Let's make a video and put it on Facebook!" And people started "liking" them. Positive feedback is something Joey lives for. So now he asks "how many likes did I get?" Or I will cheer him up by showing him likes to a photo or video.
Now he is dictating status updates. "Mom, I want our friends on Facebook to know..." "You're on Facebook! Say..."
So if you are following me on Facebook, and you see "Joey wants you to know...", rest assured a little man is at my elbow, eagerly awaiting those "Likes." They totally make his day.
Tuesday, June 10, 2014
Cracked
I have advice for every sane person on the planet: never read the comments on news sites. Comment sections have becomes fuming bastions of ignorance, hate, and widespread evil, stewing in tempting little bites of illogical nonsense that make one want to scream at the computer at 2 am.
Heaven forbid that article bring up the issue of special needs services or mental health services. Or both.
The general consensus out there appears to be that people who need help for their kids should go out there and get it. What's wrong with those parents, anyway? Lazy, selfish beasts raising brats to run wild, and then don't go out there and get them therapy if they need it. Or they over-diagnose their kids so they can drug them into oblivion. One or the other- and both opinions often from the same mouths.
What they don't know is that it isn't that simple. One, you have to know what services you need. Two, they have to actually exist.
I've been impressed by the growing range of services available to kids (mostly kids) who need a lot of support to make their way in the world. We have seen a lot of programs (relatively speaking) for non-verbal kids, kids with severe behavior issues, kids who need to be taught how to learn and respond, so that they can be taught skills they need to get through life, such as bathing, toileting... even simple things like walking. There are whole schools dedicated to teaching kids basic life skills, skills of daily living, and basic academics. There aren't enough, but there are more than there were. Or maybe we just know about more of them.
Then we get told Joey is "too high-functioning" for their "program model." Then they start listing off other programs, pause and note he is "too high-functioning" and "too verbal" for those programs, too.
Joey's school is having trouble keeping him safe. The problem is, most of the time, he is fine. But every few days, sometimes with a break of a couple weeks, he is not fine. Those are the times we need to address, so that when he finds himself in trouble, he has skills and strategies to fall back on. We need him to use that good time to learn to cope with the hard time.
You know, like everybody else. Funny that.
After all, waiting until a child melts down to try to address melting down isn't much of a help, is it? It is far better to teach someone a skill, rather than wait for them to fall on their face and then say, "oopsie, you should have done this, then you wouldn't have broken your nose!" Thanks for nothing there.
So we have decided he needs alternate educational placement, and are on the hunt for a school. The most poignant part of that meeting? Listing schools, to watch everyone frown and say, "well, that one won't be a good place for Joey..." Why? Because he's "too high functioning."
Except he isn't functional. That's why we are having to take him out of school.
What do you do with a child who is highly intelligent, yet has occasional behavior issues due to anxiety and depression? Where do you get them the mental health and behavior services they need? Where are the programs to address kids who are "high functioning" yet not functional?
Even if you could find such a program, who pays? Is this an educational program, or a medical intervention? Guess what. The schools will tell you its a mental health issue, to be addressed by medical insurance. Guess what the medical insurance tells you. Joke's on you.
In other words, there are cracks in the "system." They aren't the great yawning chasms they were only ten years ago, but they are too wide to always jump across. People get stuck in them. People like Joey.
You know that saying, if you can walk, you can dance, if you can talk, you can sing? Well, what if you can't? Where is the help to bridge the gap?
You can't enroll in a program that doesn't exist. You can't get a service that doesn't exist. All the money in the world cannot pay for an intervention that does not exist. Those are the true cracks in the system- the services that simply are not out there. At all. Anywhere.
Then people complain that people get stuck in the system of dependence, welfare, government services... well, what do you with a child who is fine most of the time, but might melt down suddenly? Unless you can teach that child to cope, how will they ever get decent employment? How will they become a functioning, taxpaying citizen? Where are the services to help them overcome these lower hurdles, that are still too high for them to get over themselves? It is like the government building that has ramps everywhere, except the front door, where there is a step. Not a huge one, not a very big one, and only one, but there it is. Then they wonder why people in wheelchairs can't come in and pay their taxes, which have to be paid in person, no proxies allowed...
So don't read the comments in news articles. When you are caught in the cracks, you don't need to know how ugly and ignorant people are of them. You are too busy trying to claw your way out, with people who keep dangling ropes just out of your reach. You don't need more.
Heaven forbid that article bring up the issue of special needs services or mental health services. Or both.
The general consensus out there appears to be that people who need help for their kids should go out there and get it. What's wrong with those parents, anyway? Lazy, selfish beasts raising brats to run wild, and then don't go out there and get them therapy if they need it. Or they over-diagnose their kids so they can drug them into oblivion. One or the other- and both opinions often from the same mouths.
What they don't know is that it isn't that simple. One, you have to know what services you need. Two, they have to actually exist.
I've been impressed by the growing range of services available to kids (mostly kids) who need a lot of support to make their way in the world. We have seen a lot of programs (relatively speaking) for non-verbal kids, kids with severe behavior issues, kids who need to be taught how to learn and respond, so that they can be taught skills they need to get through life, such as bathing, toileting... even simple things like walking. There are whole schools dedicated to teaching kids basic life skills, skills of daily living, and basic academics. There aren't enough, but there are more than there were. Or maybe we just know about more of them.
Then we get told Joey is "too high-functioning" for their "program model." Then they start listing off other programs, pause and note he is "too high-functioning" and "too verbal" for those programs, too.
Joey's school is having trouble keeping him safe. The problem is, most of the time, he is fine. But every few days, sometimes with a break of a couple weeks, he is not fine. Those are the times we need to address, so that when he finds himself in trouble, he has skills and strategies to fall back on. We need him to use that good time to learn to cope with the hard time.
You know, like everybody else. Funny that.
After all, waiting until a child melts down to try to address melting down isn't much of a help, is it? It is far better to teach someone a skill, rather than wait for them to fall on their face and then say, "oopsie, you should have done this, then you wouldn't have broken your nose!" Thanks for nothing there.
So we have decided he needs alternate educational placement, and are on the hunt for a school. The most poignant part of that meeting? Listing schools, to watch everyone frown and say, "well, that one won't be a good place for Joey..." Why? Because he's "too high functioning."
Except he isn't functional. That's why we are having to take him out of school.
What do you do with a child who is highly intelligent, yet has occasional behavior issues due to anxiety and depression? Where do you get them the mental health and behavior services they need? Where are the programs to address kids who are "high functioning" yet not functional?
Even if you could find such a program, who pays? Is this an educational program, or a medical intervention? Guess what. The schools will tell you its a mental health issue, to be addressed by medical insurance. Guess what the medical insurance tells you. Joke's on you.
In other words, there are cracks in the "system." They aren't the great yawning chasms they were only ten years ago, but they are too wide to always jump across. People get stuck in them. People like Joey.
You know that saying, if you can walk, you can dance, if you can talk, you can sing? Well, what if you can't? Where is the help to bridge the gap?
You can't enroll in a program that doesn't exist. You can't get a service that doesn't exist. All the money in the world cannot pay for an intervention that does not exist. Those are the true cracks in the system- the services that simply are not out there. At all. Anywhere.
Then people complain that people get stuck in the system of dependence, welfare, government services... well, what do you with a child who is fine most of the time, but might melt down suddenly? Unless you can teach that child to cope, how will they ever get decent employment? How will they become a functioning, taxpaying citizen? Where are the services to help them overcome these lower hurdles, that are still too high for them to get over themselves? It is like the government building that has ramps everywhere, except the front door, where there is a step. Not a huge one, not a very big one, and only one, but there it is. Then they wonder why people in wheelchairs can't come in and pay their taxes, which have to be paid in person, no proxies allowed...
So don't read the comments in news articles. When you are caught in the cracks, you don't need to know how ugly and ignorant people are of them. You are too busy trying to claw your way out, with people who keep dangling ropes just out of your reach. You don't need more.
Thursday, May 29, 2014
Please stand by
I look over the charts, the data, the evals and explanations and IEPs, my son's life in black and white and red all over. I ponder how much of this information is accurate, how much is not, and how much gets steamed out by pressing all these numbers onto a piece of a paper in a printer.
It's a big IEP day for us. With all the depression, the anger, the helplessness, the sound, and the fury.
I may not even get to tell you today what is happening, or why.
I just wanted to send a thank you out to my readers for being here with us today. For caring about us. For reading along as we clack up the hill on the roller coaster, and remind us to hold on tight.
Or open our eyes and put our hands in the air.
Please stand by.
It's a big IEP day for us. With all the depression, the anger, the helplessness, the sound, and the fury.
I may not even get to tell you today what is happening, or why.
I just wanted to send a thank you out to my readers for being here with us today. For caring about us. For reading along as we clack up the hill on the roller coaster, and remind us to hold on tight.
Or open our eyes and put our hands in the air.
Please stand by.
Saturday, May 24, 2014
Living Joyously and Laughing Freely
Happy anniversary to my love and my joy, Allan.
Seventeen years in the blink of an eye. Love growing with you!
The world has been more limitless than we imagined. So glad to have you as my partner in exploration.
Seventeen years in the blink of an eye. Love growing with you!
Friday, May 23, 2014
Fractals
It's Friday. The week has been one of those hard ones that make you really want to just hug the boys tight and let them know you love them, no matter what is ahead. There have been ups and downs and stress and meltdowns and tests and rocking of the boat. I spent last night typing up a comparative of Joey's school evals over the last 10 years. He's been in school 10 years. I spent one night looking over Andy's IEP and an afternoon in a fruitless conversation with his principal.
Joey hops off the bus. He starts talking about the weather. He wants to know where Luna is. I follow him into the house. My knee isn't going to bode well for a walk today.
"Mom, let's watch Frozen."
I hadn't seen Frozen. I've been putting it off. It's about siblings. Somewhere in the world, I have a sibling. You can see where I might put this off.
But Joey wants to watch it, it's Friday, my knee is bad. He wants me to see it. His teacher likes it. He asked for it as a reward for having a really good week and doing some cleaning and getting honor roll not long back. He starts singing a song from it. I turn on the TV.
Halfway through, he starts singing again. Then he starts the processing, out loud and in the air between us. Joey has trouble with this kind of intense emotional processing, and he immediately starts attaching his world to the characters in a distressing way. His cheeks begin reddening.
"I'm like Elsa," he starts. "I've shut Andy out. I'm dangerous!"
Two minutes later, it's reversed. Andy is Elsa, and Joey is the one "shut out." Then I'm accused of "shutting him out." He understands the pain. He understands the words. He tries to attach them to something concrete, something he can relate these emotions to. He understands his role as Elsa, and hiding himself. He goes outside and sings.
We work through the hurt. I have my own feelings about who to attach to these roles, push it aside to stay focused on Joey, and Joey's processing. We talk about why Elsa hurts, why we don't ask him to hide who he is. We love him and want him to be who he is. I try to assure him that he is far more like Kristoff than any of the other characters: brave, competent, caring.
"Andy doesn't love me." He begins to spiral. I can't stop it. I can assure him that we have true love for him, that momma does. But he insists that Andy shuts him out.
I call up the stairs. Andy's head appears.
"Andy, come down here a sec," I coax him into the den, then turn to Joey. "Well, here he is. Ask him yourself."
"Andy, do you love me?"
"Of course I do!" is the ready answer, and Andy hugs his brother.
"It's true love!" Joey clicks the understanding in place, hugging Andy. "And you'd die for me?"
"Well, duh," Andy replies, releasing his brother as a matter of course, begins his own pacing. Yeah, they're brothers. And it's True Love.
The clouds break up. Joey starts singing again. He's being Elsa. He's making his own "windstorms." The pain, however, is gone. It's a feeling of power that replaces it, a fun in pretending to toss wind and ice about, to sing a song about freedom to be yourself. Joy returns to the singing.
Andy goes back upstairs to play with his Pokemon cards. Joey goes out to the yard to sing. Outside, I can hear the refrain.
Here I stand. And here I stay.
Let it go.
Joey hops off the bus. He starts talking about the weather. He wants to know where Luna is. I follow him into the house. My knee isn't going to bode well for a walk today.
"Mom, let's watch Frozen."
I hadn't seen Frozen. I've been putting it off. It's about siblings. Somewhere in the world, I have a sibling. You can see where I might put this off.
But Joey wants to watch it, it's Friday, my knee is bad. He wants me to see it. His teacher likes it. He asked for it as a reward for having a really good week and doing some cleaning and getting honor roll not long back. He starts singing a song from it. I turn on the TV.
Halfway through, he starts singing again. Then he starts the processing, out loud and in the air between us. Joey has trouble with this kind of intense emotional processing, and he immediately starts attaching his world to the characters in a distressing way. His cheeks begin reddening.
"I'm like Elsa," he starts. "I've shut Andy out. I'm dangerous!"
Two minutes later, it's reversed. Andy is Elsa, and Joey is the one "shut out." Then I'm accused of "shutting him out." He understands the pain. He understands the words. He tries to attach them to something concrete, something he can relate these emotions to. He understands his role as Elsa, and hiding himself. He goes outside and sings.
We work through the hurt. I have my own feelings about who to attach to these roles, push it aside to stay focused on Joey, and Joey's processing. We talk about why Elsa hurts, why we don't ask him to hide who he is. We love him and want him to be who he is. I try to assure him that he is far more like Kristoff than any of the other characters: brave, competent, caring.
"Andy doesn't love me." He begins to spiral. I can't stop it. I can assure him that we have true love for him, that momma does. But he insists that Andy shuts him out.
I call up the stairs. Andy's head appears.
"Andy, come down here a sec," I coax him into the den, then turn to Joey. "Well, here he is. Ask him yourself."
"Andy, do you love me?"
"Of course I do!" is the ready answer, and Andy hugs his brother.
"It's true love!" Joey clicks the understanding in place, hugging Andy. "And you'd die for me?"
"Well, duh," Andy replies, releasing his brother as a matter of course, begins his own pacing. Yeah, they're brothers. And it's True Love.
The clouds break up. Joey starts singing again. He's being Elsa. He's making his own "windstorms." The pain, however, is gone. It's a feeling of power that replaces it, a fun in pretending to toss wind and ice about, to sing a song about freedom to be yourself. Joy returns to the singing.
Andy goes back upstairs to play with his Pokemon cards. Joey goes out to the yard to sing. Outside, I can hear the refrain.
Here I stand. And here I stay.
Let it go.
Wednesday, May 21, 2014
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