Sitting in the glow, of the laptop, I spent a moment listening. The fan in the guest room needs some WD-40. The cat is snoring. Allan's sleep machine is in a steady breath rhythm.
Joey is having some trouble. Congestion. Sometimes he wakes up with a cough, and I listen. I have him set up in the recliner, so he'll be sitting up- easier to breathe. He swallows, semi-chokes on the congestion in his sinuses in his sleep. I listen. A little cough, but no bark. The breathing is thick, but consistent. I'd go to sleep, but I listen instead.
We went to see the doctor earlier. He was scratched by the cat, and it got infected despite our cream regimen. The doctor suspects cat scratch fever, but we'd have to do a test for confirmation. The treatment would be the same, so no point. He has his antibiotic. Since the scratch is on his face, I worry- the nearest lymph nodes are the neck ones, I think. I listen.
A little choke, but he recovers. I doubt he'll be going to school tomorrow. He can't be getting much decent sleep. I don't know if the congestion is part of the infection, or just an opportunistic something else. It's almost 4 am, and I have things to do tomorrow. I need some sleep. Instead, I listen.
Caught between the quiet waking and the quiet of sleeping, I listen to my baby, making sure he is safe. It's what moms do, isn't it?
Friday, May 20, 2016
Tuesday, May 10, 2016
Sunday, May 01, 2016
Where Awareness and Acceptance End- Inclusion Illusion
I was reading an article today, and nerves sang. The article was "Let's Be Blunt: The Illusion of Inclusion." The message was one we face: kids with special needs not only don't count, but are openly despised by the general population.
The truth of inclusion is that it doesn't really exist- and hence it didn't work for us. Joey is in a special school- and we wait to find out if he is going to be wait listed for the only high school program that can accommodate him next year that we know of (and what happens if he is wait-listed? Where will he go? How will he get an education, and access his RIGHTS?)
Even the "inclusion classroom"- which is really a special-needs classroom where kids just require less support or can be pulled out of the classroom for services they need- didn't work for Andy, and we had to pull him from school altogether. The attitude of "you are taking resources from NORMAL kids!" is so prevalent and ingrained, we don't do any real inclusion. My kid is seen as a project, a nuisance, a threat, a drain, an "inspiration", an idiot, a distraction... instead of as a member of the community, a child, a human being.
That ingraining comes out in so many ways, from so many directions. People think nothing of insulting your kid casually, and then getting mad at you when you try to make it stop. They tell you to leave spaces because they think you have no right to be there, to exist as you are. They judge you, often openly and loudly, in public places. That people think this is OK is just insane. Cruel. Heartless.
I will never forget sitting in the rows of parents at the spelling bee. Third grade. Joey introduced himself with his typical flamboyance and joy. They laughed; not with him, but clearly and explicitly at him. The attitude was clear, and voiced in plain English: oh how cute, they let a retarded kid up there. Isn't that sweet. Poor kid, making a fool of himself, why do they do that? The assumption of his intelligence- that he lacked it and didn't really deserve to be on that stage- so clear. They didn't notice me there, saying nothing. I'm a big lady, but this isn't unusual. I am often the Invisible Person. I assume these other people knew each other, and they certainly did not know who I was. I assume they weren't deliberately cruel and mean.
By the end of the bee, they were out of their chairs, cheering for him. If the last round of a spelling bee worked like all the other rounds, he would have won- but you have to spell an extra word. And when he missed it, he got flustered and decided to bow out. He deliberately mis-spelled the next word, when the other two contestants were brought back, even though they had mis-spelled their words and he had spelled his correctly in the next-to-last round. Changing the rules confused him, made him frustrated and angry, and he was done. He bowed out. But he had shown those idiots in the crowd that their assumptions about the special needs kid not deserving to be on that stage were totally wrong.
They knew he had won that spelling bee.
I often wonder if they took the lesson to heart, or if our society is so ingrained with discrimination against those with differences, those who require different things from society, that they just went back to those comfortable old assumptions. The ones supported by society, by media, by comedians, by schools, by legislators, by businesses, by politicians, even by the medical establishment(and these links are just examples or information I could dig up on the fly). Did they imagine him as an inspiration porn meme, or did they actually go out and change their attitude? Will they now really include him, and people like him, or did we just make it worse- spread the stigma by counter-example?
Joey is a human being. Andy is a human being. Guess what? So am I. So are you. Let's all start acting like it. We are all in this together, and none of us make it out alive. Treat others as you would wish to be treated, no exceptions. Why is this acceptance thing so hard for everybody? Would you want to be the kid that gets laughed at, left out, segregated, and left behind to rot? Can't we even be inclusive of ourselves?
The truth of inclusion is that it doesn't really exist- and hence it didn't work for us. Joey is in a special school- and we wait to find out if he is going to be wait listed for the only high school program that can accommodate him next year that we know of (and what happens if he is wait-listed? Where will he go? How will he get an education, and access his RIGHTS?)
Even the "inclusion classroom"- which is really a special-needs classroom where kids just require less support or can be pulled out of the classroom for services they need- didn't work for Andy, and we had to pull him from school altogether. The attitude of "you are taking resources from NORMAL kids!" is so prevalent and ingrained, we don't do any real inclusion. My kid is seen as a project, a nuisance, a threat, a drain, an "inspiration", an idiot, a distraction... instead of as a member of the community, a child, a human being.
That ingraining comes out in so many ways, from so many directions. People think nothing of insulting your kid casually, and then getting mad at you when you try to make it stop. They tell you to leave spaces because they think you have no right to be there, to exist as you are. They judge you, often openly and loudly, in public places. That people think this is OK is just insane. Cruel. Heartless.
I will never forget sitting in the rows of parents at the spelling bee. Third grade. Joey introduced himself with his typical flamboyance and joy. They laughed; not with him, but clearly and explicitly at him. The attitude was clear, and voiced in plain English: oh how cute, they let a retarded kid up there. Isn't that sweet. Poor kid, making a fool of himself, why do they do that? The assumption of his intelligence- that he lacked it and didn't really deserve to be on that stage- so clear. They didn't notice me there, saying nothing. I'm a big lady, but this isn't unusual. I am often the Invisible Person. I assume these other people knew each other, and they certainly did not know who I was. I assume they weren't deliberately cruel and mean.
By the end of the bee, they were out of their chairs, cheering for him. If the last round of a spelling bee worked like all the other rounds, he would have won- but you have to spell an extra word. And when he missed it, he got flustered and decided to bow out. He deliberately mis-spelled the next word, when the other two contestants were brought back, even though they had mis-spelled their words and he had spelled his correctly in the next-to-last round. Changing the rules confused him, made him frustrated and angry, and he was done. He bowed out. But he had shown those idiots in the crowd that their assumptions about the special needs kid not deserving to be on that stage were totally wrong.
They knew he had won that spelling bee.
I often wonder if they took the lesson to heart, or if our society is so ingrained with discrimination against those with differences, those who require different things from society, that they just went back to those comfortable old assumptions. The ones supported by society, by media, by comedians, by schools, by legislators, by businesses, by politicians, even by the medical establishment(and these links are just examples or information I could dig up on the fly). Did they imagine him as an inspiration porn meme, or did they actually go out and change their attitude? Will they now really include him, and people like him, or did we just make it worse- spread the stigma by counter-example?
Joey is a human being. Andy is a human being. Guess what? So am I. So are you. Let's all start acting like it. We are all in this together, and none of us make it out alive. Treat others as you would wish to be treated, no exceptions. Why is this acceptance thing so hard for everybody? Would you want to be the kid that gets laughed at, left out, segregated, and left behind to rot? Can't we even be inclusive of ourselves?
Friday, April 15, 2016
The Good with the Bad
Most days with Joey are good days. He's happy. He feels safe at school. He likes to learn new things, and show off what he knows and can do (just ask him a math question...) He's discovered imagination and Star Wars and healthy eating. Let him script and do his thing, and he will skip through the day being Awesome and trying to bring you along in the Awesome. If feeling slightly off, he may script more, or turn to his favorite video game (which currently involves making cupcakes).
Then there are the bad days. Usually he's not feeling well- it can be hard to know when Joey is sick, or tired, or just grumpy, because he's working so hard to be happy and to please everybody and be perfect. When this fails in his own eyes, the spiral begins. He thought he was playing, and you mistook his action for something aggressive or inappropriate. He accidentally knocks something over or spills his water. He stubs a toe. He gets something wrong on an assignment. These little things become a straw upon the camel's back, and once it breaks, we have a Bad Day.
Joey has a lot of difficulty recovering from a Bad Day. He can't just let it go, calm down, or start over. He can't shrug it off and turn it around on his own. He needs help. Sometimes he just needs a nudge in the right direction in the right way. Sometimes he needs a lot of support and patience. Sadly, there is little knowing which it will be right this minute in the Bad Day, and if the spiral continues, we are headed for meltdown. It builds. The steam doesn't really release; those early signs of spiral are just more pressure. He knows this isn't going well. He doesn't know how to change it. He can't stop the spiral, either. The frustration of continuing to "do it wrong" bursts out as self-deprecation. Too often, this has turned out badly, very, very badly, and so he has now cut to the chase and started in himself, knowing from experience that this is a Bad Day, and there is nothing he can do about it now.
In the regular school, Bad Day meant write-ups, suspensions, punishments. Even if he was allowed to recover, after about 20 minutes- when he was outwardly looking better- he would be sent back into the frying pan; no one understood he needed much more time, that this was more like a seismic affair, complete with growing quakes and aftershocks. The blow-up is the center of the event, not the beginning- or the end.
Joey has internalized this criminalization of being overwhelmed, of being unable to recover without help, of spiraling without brakes. The frustration of it makes him more aggressive, in trying to get out the fear, the frustration, the explosive energy of the anxiety of I Did Something Wrong and Now They Will Hate Me. That aggression can turn into flight. Without flight, it becomes fight. Will be bite his arm? throw something? posture aggressively towards another person? There is no way to know how that fight will play out.
On those Good Days... the majority of days, when things are quiet, and Joey is humming along doing his thing and being himself and starting to store up those little irritations and straws up on his back... those days, he can do anything. He could move mountains and conquer the world. A flash of that grin and a high five and he melts all hearts.
It's on the Bad Days that he needs the support, the help, the extra time and patience. It is on these days that often Joey, and many like him, get exactly the opposite. Instead of understanding that this is just part of Joey (everybody has bad days, after all- you don't stop being their friend just because they are having a bad day, right?), he's treated as a broken thing. A you-aren't-Joey-today-what's-the-matter-with-you monster, instead of a kid having a bad day. If you were having a bad day, wouldn't you want your friends to cheer you up, maybe pop in your favorite movie, bring you some flowers or something? You certainly wouldn't want them to scream at you, tell you to leave, turn you away, or punish you. If that became the regular response to you having a bad day, you might start being self-deprecating, too. That's what happens to people who are emotionally abused, day in, day out, even by people who have no clue what they are doing or that they are doing it.
Recovering from this kind of grueling abuse is a long road, even when the exposure wasn't long at all- it doesn't take much to grind a child down. Several years of school is not a short time, and we are just beginning our road. I am grateful for his school, where people are understanding Joey and trying their best to help him, instead of just punishing him for having Bad Days- even a spate of them. This understanding and effort is the first step in teaching Joey how to cope with Bad Days, how to build a toolkit to respond to (and even prevent) getting overwhelmed, and giving him some brakes for the spiral. Without this first step, there is no way for him to understand, because he reads loud and clear that he is, as a person, Bad, since you are refusing to help him and are punishing him for being himself, and trying his best. When a child does their very best, and it isn't enough, you don't slap them.
You help them.
That is how they learn to be independent and confident in their growing skills.
Then there are the bad days. Usually he's not feeling well- it can be hard to know when Joey is sick, or tired, or just grumpy, because he's working so hard to be happy and to please everybody and be perfect. When this fails in his own eyes, the spiral begins. He thought he was playing, and you mistook his action for something aggressive or inappropriate. He accidentally knocks something over or spills his water. He stubs a toe. He gets something wrong on an assignment. These little things become a straw upon the camel's back, and once it breaks, we have a Bad Day.
Joey has a lot of difficulty recovering from a Bad Day. He can't just let it go, calm down, or start over. He can't shrug it off and turn it around on his own. He needs help. Sometimes he just needs a nudge in the right direction in the right way. Sometimes he needs a lot of support and patience. Sadly, there is little knowing which it will be right this minute in the Bad Day, and if the spiral continues, we are headed for meltdown. It builds. The steam doesn't really release; those early signs of spiral are just more pressure. He knows this isn't going well. He doesn't know how to change it. He can't stop the spiral, either. The frustration of continuing to "do it wrong" bursts out as self-deprecation. Too often, this has turned out badly, very, very badly, and so he has now cut to the chase and started in himself, knowing from experience that this is a Bad Day, and there is nothing he can do about it now.
In the regular school, Bad Day meant write-ups, suspensions, punishments. Even if he was allowed to recover, after about 20 minutes- when he was outwardly looking better- he would be sent back into the frying pan; no one understood he needed much more time, that this was more like a seismic affair, complete with growing quakes and aftershocks. The blow-up is the center of the event, not the beginning- or the end.
Joey has internalized this criminalization of being overwhelmed, of being unable to recover without help, of spiraling without brakes. The frustration of it makes him more aggressive, in trying to get out the fear, the frustration, the explosive energy of the anxiety of I Did Something Wrong and Now They Will Hate Me. That aggression can turn into flight. Without flight, it becomes fight. Will be bite his arm? throw something? posture aggressively towards another person? There is no way to know how that fight will play out.
On those Good Days... the majority of days, when things are quiet, and Joey is humming along doing his thing and being himself and starting to store up those little irritations and straws up on his back... those days, he can do anything. He could move mountains and conquer the world. A flash of that grin and a high five and he melts all hearts.
It's on the Bad Days that he needs the support, the help, the extra time and patience. It is on these days that often Joey, and many like him, get exactly the opposite. Instead of understanding that this is just part of Joey (everybody has bad days, after all- you don't stop being their friend just because they are having a bad day, right?), he's treated as a broken thing. A you-aren't-Joey-today-what's-the-matter-with-you monster, instead of a kid having a bad day. If you were having a bad day, wouldn't you want your friends to cheer you up, maybe pop in your favorite movie, bring you some flowers or something? You certainly wouldn't want them to scream at you, tell you to leave, turn you away, or punish you. If that became the regular response to you having a bad day, you might start being self-deprecating, too. That's what happens to people who are emotionally abused, day in, day out, even by people who have no clue what they are doing or that they are doing it.
Recovering from this kind of grueling abuse is a long road, even when the exposure wasn't long at all- it doesn't take much to grind a child down. Several years of school is not a short time, and we are just beginning our road. I am grateful for his school, where people are understanding Joey and trying their best to help him, instead of just punishing him for having Bad Days- even a spate of them. This understanding and effort is the first step in teaching Joey how to cope with Bad Days, how to build a toolkit to respond to (and even prevent) getting overwhelmed, and giving him some brakes for the spiral. Without this first step, there is no way for him to understand, because he reads loud and clear that he is, as a person, Bad, since you are refusing to help him and are punishing him for being himself, and trying his best. When a child does their very best, and it isn't enough, you don't slap them.
You help them.
That is how they learn to be independent and confident in their growing skills.
Sunday, April 10, 2016
Saturday, April 09, 2016
What day is it? Where am I? What's Going On?
Oh, right, Spring. It's here. Kind of. And Joey's birthday is upon us- he is so excited, he couldn't focus in school at all or get anything done. Besides- spring! Time to go ALL OUT NUTSO-BONKO!!!
Sensory processing issues are part and parcel with autism. Since autism is neurological and pervasive, Joey's whole experience is affected, and his nervous system interprets and deals with sensory data as differently as all the other data he gets. We spend a lot of time figuring out what his sensory needs are, how he is seeing the world around him, and what strategies and interventions will help him cope and function in the world.
One of the reasons we spend so much time on this is because it isn't constant. Every spring, everything shifts and changes. Things that bother him now will suddenly be fine. Situations he could tolerate at Christmas now become overwhelming and impossible. He does this again in the fall. The season change and shift, the transition between extremes of weather and temperature, throw him into a tizzy, and his body shifts and changes with it.
This annoys people who don't know much about sensory integration and why it can be a problem. They treat it like a bee allergy, where once you react, you always react. This month he may be sound-sensitive; in six months, that may shift around and have him not be able to process sound (resulting in not being able to understand people talking to him) or to an over-tolerance (so that he will actually seek loud sounds, and his own voice volume goes up). Certain textures will swing wildly from tolerable to intolerable to craved. There is no way to know what will shift, what it will shift to; old problems re-emerge and newer issues fade or dramatically worsen.
He can't tell, either. If you thing it is confusing and frustrating for us, it is tenfold for him. Things he enjoyed doing are now too noisy, too bright, nor not enough. This means his own strategies no longer work, and he has to go back to square one, just as we do. He has to re-think it all out all over again, while being uncomfortable and even scared. Not fun.
The excitement of upcoming birthday gets tossed into the spring mix, along with the looming summer schedule changes. Anxiety everywhere! I wish there was a way to predict which way the sensitivities will swing, so we can prepare, so we can help him prepare, so we can get out the right tools for coping with the changes.
Right now, I'm just doing what I can- making sure my sensory bag is stocked, checking up on the paint and playdough supplies, getting ready to get the back yard in order so he has space to run and jump and think. Oh, and shhhhh... birthday surprise... buying him a new bike...
Sensory processing issues are part and parcel with autism. Since autism is neurological and pervasive, Joey's whole experience is affected, and his nervous system interprets and deals with sensory data as differently as all the other data he gets. We spend a lot of time figuring out what his sensory needs are, how he is seeing the world around him, and what strategies and interventions will help him cope and function in the world.
One of the reasons we spend so much time on this is because it isn't constant. Every spring, everything shifts and changes. Things that bother him now will suddenly be fine. Situations he could tolerate at Christmas now become overwhelming and impossible. He does this again in the fall. The season change and shift, the transition between extremes of weather and temperature, throw him into a tizzy, and his body shifts and changes with it.
He can't tell, either. If you thing it is confusing and frustrating for us, it is tenfold for him. Things he enjoyed doing are now too noisy, too bright, nor not enough. This means his own strategies no longer work, and he has to go back to square one, just as we do. He has to re-think it all out all over again, while being uncomfortable and even scared. Not fun.
The excitement of upcoming birthday gets tossed into the spring mix, along with the looming summer schedule changes. Anxiety everywhere! I wish there was a way to predict which way the sensitivities will swing, so we can prepare, so we can help him prepare, so we can get out the right tools for coping with the changes.
Right now, I'm just doing what I can- making sure my sensory bag is stocked, checking up on the paint and playdough supplies, getting ready to get the back yard in order so he has space to run and jump and think. Oh, and shhhhh... birthday surprise... buying him a new bike...
Wednesday, April 06, 2016
Autism Month, Day 6
Isolation.
It creeps up on you and seeps into your fiber, as you rush about to therapies, meetings, schools, jobs. You hardly have time for the phone calls you need to make for doctors, appointments, counselors, more therapists, more schools, more meetings, there is little time for calling a friend.
When Joey was little, I worried about meltdowns, overload, and unexpected behavior. We went out, anyway, because I could always bring my Mary Poppins unending bag with us, prepare, and hey, I could always pick him up and take him to the car. I'll never forget the first time we used our handicap parking placard- we had been nervous about getting it- and discovered that it made our lives safer and easier. We could at least expose him to a variety of places and activities, even if we had to leave suddenly and quickly.
He's bigger now. He lasts longer, but when he's done, he's done. He's too big to pick up and save. If he melts down on the boardwalk, I'm in trouble, he's in trouble. When they are little, people shrug and smile and frown and whatever. When they are big, they can be perceived as a threat. I have to pick up on the warning signs before he gets to the screaming stage, or it can be dangerous for everyone. That means I have to pay even more attention than before. I can't make a mistake.
This means less going out- it takes a lot more planning to go, a lot more energy. Fewer people are tolerant, and far fewer accepting and helpful. Less going out means seeing less people. Going out with fewer friends. Less and less playdates. And when you do go out, less conversation. When you talk less, fewer people want to hang out with you and your family.
With special needs parenting, you find yourself more often in crisis mode. All those phone calls aren't being made for fun, you know. Hitting puberty means more danger of depression, anxiety, frustration, angst. Add the anxiety, depression, and frustration of autism on top of that, and you have emotional nitro glycerin. You work to keep your kid safe, engaged, moving forward; this can take an enormous amount of energy with a non-disabled teenager. As we run about trying to find a new school for Joey, the anxiety for his future mounts, adding to the stew.
When in crisis mode, very often the checking on friends falls to the wayside. You want to be a good friend, and if they fall into crisis, you would totally be there. But right now, unless they are in crisis, your energy has to be focused on your own page-turning chapter. You might have a time for a quick check- you thank the stars for Facebook- but unless they can say "hi!" in about three minutes, you have to make do with the info you have. Yes, I've heard that you make time for what's important to you, but in crisis mode, your kid is what is important to you. His future. His life.
You might think you know where this is going, but I'm going to turn right here at Albuquerque, and give a shout out to my friend, Sue.
You see, here in the middle of crisis mode isolation, I get reminded that you make time for what's important, and that's a reminder that my phone isn't exactly ringing off the hook with people looking for me, or wondering where I am, or what the heck is going on. I put up Facebook posts, and assume everybody else must be in crisis mode, too, and that will have to do. Quite a few people are- when you are in the special needs community, you know a lot more families stuck in that same crisis mode you are.
But there is only one who has actually called, and regularly pokes me with a "you OK over there, woman?"
That would be Sue.
We were roommates in college. I have no clue how she survived that. I am the WORST ROOMMATE EVER, especially when you are clean, organized, get-it-done woman like Sue. Even more astonishing, she has stuck to me through thick, thin, stormy weather, and all the colors of the rainbow. Holy Hannah, the effort that woman has put into staying friends with me! She calls. She shows up in DC and makes sure I know, so I can get together and see her. Even in the face of months of unreturned poking and prodding and calling and everything, she sticks with me. If I called her tonight and said, help! You know what?
She'd help.
A shout out to good friends, through years and ages, and hoping she knows if she finds herself in crisis mode, that's why they invented cell phones... so you can call at any time, day or night. And they invented planes, too, in case I need to get there. I know she'd do the same for me... because she does.
Thank you, Sue.
It creeps up on you and seeps into your fiber, as you rush about to therapies, meetings, schools, jobs. You hardly have time for the phone calls you need to make for doctors, appointments, counselors, more therapists, more schools, more meetings, there is little time for calling a friend.
When Joey was little, I worried about meltdowns, overload, and unexpected behavior. We went out, anyway, because I could always bring my Mary Poppins unending bag with us, prepare, and hey, I could always pick him up and take him to the car. I'll never forget the first time we used our handicap parking placard- we had been nervous about getting it- and discovered that it made our lives safer and easier. We could at least expose him to a variety of places and activities, even if we had to leave suddenly and quickly.
He's bigger now. He lasts longer, but when he's done, he's done. He's too big to pick up and save. If he melts down on the boardwalk, I'm in trouble, he's in trouble. When they are little, people shrug and smile and frown and whatever. When they are big, they can be perceived as a threat. I have to pick up on the warning signs before he gets to the screaming stage, or it can be dangerous for everyone. That means I have to pay even more attention than before. I can't make a mistake.
This means less going out- it takes a lot more planning to go, a lot more energy. Fewer people are tolerant, and far fewer accepting and helpful. Less going out means seeing less people. Going out with fewer friends. Less and less playdates. And when you do go out, less conversation. When you talk less, fewer people want to hang out with you and your family.
With special needs parenting, you find yourself more often in crisis mode. All those phone calls aren't being made for fun, you know. Hitting puberty means more danger of depression, anxiety, frustration, angst. Add the anxiety, depression, and frustration of autism on top of that, and you have emotional nitro glycerin. You work to keep your kid safe, engaged, moving forward; this can take an enormous amount of energy with a non-disabled teenager. As we run about trying to find a new school for Joey, the anxiety for his future mounts, adding to the stew.
When in crisis mode, very often the checking on friends falls to the wayside. You want to be a good friend, and if they fall into crisis, you would totally be there. But right now, unless they are in crisis, your energy has to be focused on your own page-turning chapter. You might have a time for a quick check- you thank the stars for Facebook- but unless they can say "hi!" in about three minutes, you have to make do with the info you have. Yes, I've heard that you make time for what's important to you, but in crisis mode, your kid is what is important to you. His future. His life.
You might think you know where this is going, but I'm going to turn right here at Albuquerque, and give a shout out to my friend, Sue.
You see, here in the middle of crisis mode isolation, I get reminded that you make time for what's important, and that's a reminder that my phone isn't exactly ringing off the hook with people looking for me, or wondering where I am, or what the heck is going on. I put up Facebook posts, and assume everybody else must be in crisis mode, too, and that will have to do. Quite a few people are- when you are in the special needs community, you know a lot more families stuck in that same crisis mode you are.
But there is only one who has actually called, and regularly pokes me with a "you OK over there, woman?"
That would be Sue.
We were roommates in college. I have no clue how she survived that. I am the WORST ROOMMATE EVER, especially when you are clean, organized, get-it-done woman like Sue. Even more astonishing, she has stuck to me through thick, thin, stormy weather, and all the colors of the rainbow. Holy Hannah, the effort that woman has put into staying friends with me! She calls. She shows up in DC and makes sure I know, so I can get together and see her. Even in the face of months of unreturned poking and prodding and calling and everything, she sticks with me. If I called her tonight and said, help! You know what?
She'd help.
A shout out to good friends, through years and ages, and hoping she knows if she finds herself in crisis mode, that's why they invented cell phones... so you can call at any time, day or night. And they invented planes, too, in case I need to get there. I know she'd do the same for me... because she does.
Thank you, Sue.
Monday, April 04, 2016
Autism Month, Day 4
The alarm goes off. My mind swims back to consciousness, prodded by the chimes of my cellphone and the soft nudge of a cat. She wants breakfast. I want more sleep. I've been having issues with that, trying to sleep and being awakened, or simply worrying myself for hours. I need to start a new story, so I can make up some characters and let my brain whirr on that instead of the fifty things I need to try to do tomorrow; I'd get to sleep faster. Allan has already left for work, so the bathroom is free. I stumble in that direction.
Sometimes Joey is already up, playing a game or chasing cats. Sometimes he comes in and slips into Allan's spot, cuddling (and sometimes also playing a game), getting in some mom snuggles. Today, he is rolled up like a boy burrito in his blankets in his own bed. Andy is up, on his iPad, petting a cat.
"Rise and shine, Buddy!" I call as I head down the stairs. There is lunch to be made, cats to feed, pills to prep, breakfast to put together. Sometimes I let Joey make his own lunch, but it makes him grumpy. With the late sleep, another possible red flag, I start on it myself. A sandwich, an apple, some crackers he may or may not eat; sometimes they are fine, sometimes he puts them on his "junk food" list in his head, and won't touch them. I think of the wonderful, creative lunches I've seen online. I bought some containers to make some, but I've never done it.
Joey appears in his favorite shirt, and I hand him pills and breakfast. We keep trying to find something to reel in the anxiety, but this combo is the only thing that both takes the edge off while not having him go nuts or feel weird. I am not looking forward to the day his body compensates and makes it useless. I push aside the pang of futility and go through his notebook, looking for forms I need to sign and return.
"STOP TAKING MY HAND!" Joey yells, and I jump. What?
He's staring at me, and my brain is racing. What is it? I'm not near him. His hands are empty.
"STOP TAKING MY HAND!" he yells louder, and then laughs. "LET GO OF ME!" He picks up a stick- a walking-stick or cane size, not his usual writing size- and heads to the back yard. I finish the lunch, put the bag together with a supply of chewing gum, and my next alarm goes off- time to remind Joey to put on shoes and make sure he is ready for the car to come. He tromps back in just as I reach my phone to turn it off.
"THE GARBAGE WILL DO!" he shouts, grabbing his backpack, and giggling mightily.
Oh, Right. Star Wars. It's going to be a yell-the-script kind of day.
As he slips into the back seat and buckles in, I silently wish the school folks good luck. It's going to be loud. Very loud.
May the Force be with him.
Sometimes Joey is already up, playing a game or chasing cats. Sometimes he comes in and slips into Allan's spot, cuddling (and sometimes also playing a game), getting in some mom snuggles. Today, he is rolled up like a boy burrito in his blankets in his own bed. Andy is up, on his iPad, petting a cat.
"Rise and shine, Buddy!" I call as I head down the stairs. There is lunch to be made, cats to feed, pills to prep, breakfast to put together. Sometimes I let Joey make his own lunch, but it makes him grumpy. With the late sleep, another possible red flag, I start on it myself. A sandwich, an apple, some crackers he may or may not eat; sometimes they are fine, sometimes he puts them on his "junk food" list in his head, and won't touch them. I think of the wonderful, creative lunches I've seen online. I bought some containers to make some, but I've never done it.
Joey appears in his favorite shirt, and I hand him pills and breakfast. We keep trying to find something to reel in the anxiety, but this combo is the only thing that both takes the edge off while not having him go nuts or feel weird. I am not looking forward to the day his body compensates and makes it useless. I push aside the pang of futility and go through his notebook, looking for forms I need to sign and return.
"STOP TAKING MY HAND!" Joey yells, and I jump. What?
He's staring at me, and my brain is racing. What is it? I'm not near him. His hands are empty.
"STOP TAKING MY HAND!" he yells louder, and then laughs. "LET GO OF ME!" He picks up a stick- a walking-stick or cane size, not his usual writing size- and heads to the back yard. I finish the lunch, put the bag together with a supply of chewing gum, and my next alarm goes off- time to remind Joey to put on shoes and make sure he is ready for the car to come. He tromps back in just as I reach my phone to turn it off.
"THE GARBAGE WILL DO!" he shouts, grabbing his backpack, and giggling mightily.
Oh, Right. Star Wars. It's going to be a yell-the-script kind of day.
As he slips into the back seat and buckles in, I silently wish the school folks good luck. It's going to be loud. Very loud.
May the Force be with him.
Sunday, April 03, 2016
On the Third Day Of April
Joey's baseball season has begun! Joey plays for the Challenger's League, through Little League. He loves to play, though the spring season is often hard for us by the end- the heat cranks up, and Joey doesn't do heat. Perfectionism is a problem, too- although everybody gets to hit, run, and score, he know the real rules of baseball. He gets upset when he swings and misses. As the season progresses, so will he; but the first game can be tough. It's a transition, like any other.He's been gearing up this year, though. Around Christmas, all the lessons of the nutritionist sunk in and clicked, and he's been working on his weight and strength, eating better and going out to play more. He's lost nearly 30 pounds- which is even more amazing, as he has gained about 3 inches in height at the same time. If I could get him to practice, he'd knock the leather off the ball.
So it is time to pull out our baseball scripts, find a good place to keep our uniform, and get ready for some fun Saturday games. We are Marlins again this year, so it should be awesome!
Saturday, April 02, 2016
On The Second Day of April... WE ARE HERE!
Today is Autism Acceptance Day. It is mostly a day for autistic people to celebrate their existence, since so many people seem bent on wiping them out and making them feel like burdens on society. This is much like many other identity holidays- the vast majority of folks want to make them shut up, go away, and (terrifyingly many) die.
That's right. There are people who think Joey should not exist. And since he does exist, he is a waste of resources and oxygen, and that he should die.
If that doesn't make you see red, and want to fix this huge ignorance problem, I cannot imagine what you would care about at all. Or maybe you're one of those people who want him to go away, whether you admit it or not. Joey is a human being. Like you. How would you feel if someone told you to shut up, go away, and die? Likely, you would do everything in your power to fight that person.
Imagine doing that everyday. Everywhere. All the time. If you are minority in this country, you probably know what I am talking about.
We have a saying around here: never read the comments. Whenever autism pops up on mainstream media, reading the comments is asking for high blood pressure and Raging Momma Bear Syndrome. People who write that the child misbehaved, so they deserved to be handcuffed, manhandled, arrested, beaten, tossed into closets, put into straight jackets. People who scream that school budgets take resources from "regular" kids and my kid should just go home. People who think supporting my kid to be educated is a waste of taxpayer money. You know, my money- I pay taxes, people.
It gets worse as they get older. People seem to understand more about being outraged when a 5-year-old is arrested. Not so much when that child is 13, and still having meltdowns. Because they are- surprise!- autistic.
I will never understand people who tell me and families like mine that we shouldn't take our kids out in public, because our kids make them uncomfortable. People who call us selfish because we want to eat in a restaurant or shop in a Walmart or play in a park. People who accuse us of poor parenting, laziness, or Welfare Queens because our kids have a disability (which is laughable, since we don't get any public assistance benefits, other than the special education the law says is the right of my child- you know, to have access to education like everybody else. They keep fussing at us to get Medicaid, though, because a lot of service providers don't take private insurance, only Medicaid... what?)
My son can read, too. He can read those horrible things people say. He hears the obnoxious things people say. He sees what they do- the exclusion, the bullying, the neglect. That if he doesn't meet the expectations of people who have no clue what his life is like, he is worthless and should disappear and stop existing. He hears you.
This is why it is important to celebrate. Visibly. Clearly. Loudly. Like the Whos on the dust speck on Horton's flower, it is a way for Joey to say, "We are here! We are here! WE ARE HERE!"
Let's help him out, so people will stop trying to boil the flower in oil. Get a pan. Get a horn. Make some noise. Let everyone know, WE ARE HERE!
If that doesn't make you see red, and want to fix this huge ignorance problem, I cannot imagine what you would care about at all. Or maybe you're one of those people who want him to go away, whether you admit it or not. Joey is a human being. Like you. How would you feel if someone told you to shut up, go away, and die? Likely, you would do everything in your power to fight that person.
Imagine doing that everyday. Everywhere. All the time. If you are minority in this country, you probably know what I am talking about.
We have a saying around here: never read the comments. Whenever autism pops up on mainstream media, reading the comments is asking for high blood pressure and Raging Momma Bear Syndrome. People who write that the child misbehaved, so they deserved to be handcuffed, manhandled, arrested, beaten, tossed into closets, put into straight jackets. People who scream that school budgets take resources from "regular" kids and my kid should just go home. People who think supporting my kid to be educated is a waste of taxpayer money. You know, my money- I pay taxes, people.
It gets worse as they get older. People seem to understand more about being outraged when a 5-year-old is arrested. Not so much when that child is 13, and still having meltdowns. Because they are- surprise!- autistic.
I will never understand people who tell me and families like mine that we shouldn't take our kids out in public, because our kids make them uncomfortable. People who call us selfish because we want to eat in a restaurant or shop in a Walmart or play in a park. People who accuse us of poor parenting, laziness, or Welfare Queens because our kids have a disability (which is laughable, since we don't get any public assistance benefits, other than the special education the law says is the right of my child- you know, to have access to education like everybody else. They keep fussing at us to get Medicaid, though, because a lot of service providers don't take private insurance, only Medicaid... what?)
My son can read, too. He can read those horrible things people say. He hears the obnoxious things people say. He sees what they do- the exclusion, the bullying, the neglect. That if he doesn't meet the expectations of people who have no clue what his life is like, he is worthless and should disappear and stop existing. He hears you.
Let's help him out, so people will stop trying to boil the flower in oil. Get a pan. Get a horn. Make some noise. Let everyone know, WE ARE HERE!
Friday, April 01, 2016
On the First Day of April, My True Love Gave to Me...
Welcome to Autism Awareness Month. Yay.
This is my Joey. Joey is autistic.
He likes Mario Brothers, Star Wars, and cats. He loves music, art, and math. If you honk a car horn, he will giggle uncontrollably. He likes a young lady in his school, and wants to take her to the movies. He loves to cook, especially if it involves chocolate. His favorite sport is baseball, his favorite character is Buzz Lightyear, and his favorite color is green.
Joey is a human being, just like you.
In fact, he is one of the awesomest human beings ever. One of the strongest people I have ever met. One of the kindest, most loyal, most thoughtful and empathetic people I have ever known. He wants to be perfect so that he can make his teachers and family proud, and happy, and hugged. He wants to make everybody feel better and laugh.
He wants to make the world a better place.
We love you, Buddy.
Do you know who I am?
Do I know who you are?
See we one another clearly?
Do we know who we are?
(Harry Belafonte, Turn the World Around)
Saturday, March 26, 2016
Back to Square One
It's almost midnight, but Andy peeks into my door.
"Whatcha need, Buddy?" I try to keep my voice low; Allan is already asleep.
"I woke up. Can I have a song to go back to sleep?"
He had a long, hard day, with a lot of think about.
This morning we started our search for a new school for Joey. We finally got him settled and feeling safe at his school, the one where Joey's safety has been paramount. The one set up with him specifically in mind. The one where he was finally in the groove and getting things done.
The one we were told he would never have to leave? Oops, they aren't going to do high school. They are going to stick to K-8. Sucks to be us.
It's like people are new here. Or to autism. Or to Joey. The point was to limit the changes, the transitions. To figure out his needs and get those met effectively. To get him settled so he could focus on important stuff- like reading. Or history. Or math.
But here we are, and we saw our first option today. There aren't many.
What we need is a school that can provide the intensive sensory integration and regulation he needs, be a safe space, and accommodate his intellect, all at the same time. He needs 1:1 academic instruction, an array of testing accommodations, and a number of classroom accommodations, including readily available space for recovery and regulation breaks. He needs academic challenges in math and science, and extra support with language-heavy tasks such as writing and responding to questions (history is a definite issue). He needs faculty that can deal with communication difficulties and learn to "speak Joey" while he learns to communicate effectively. He needs all this is a low-stress and flexible environment because of severe anxiety.*
We took Andy with us, because one thing we definitely need is a kid point-of-view, and we can't introduce Joey into a bunch of strange places. We need to have a plan and a strategy before we take Joey to a place he may assume is where he is destined to go. Yet that kid-view is key; kids know when things are uncomfortable or not-good in ways adults no longer think about or understand. On the other hand, it must be a bit surreal for Andy, to be basically acting as a big brother for his big brother, and scoping out these strange environments. After all, Andy has his own issues with schools, settings, and anxiety.
Option 1 is a beautiful school. There is no doubt that it is designed to do what it does, and that is what it does. The walls are full of student art, and the projects are wonderful. The students have a beautiful, professional kitchen, where they learn to prepare their lunches- and we are talking about pork roast and gourmet cupcakes, food for about 60 (students and staff). Kids with more difficulty have cooking lessons after lunch, so that they can have basic independence skills. A big, beautiful classroom for life skills, with a variety of task areas, to meet a range of abilities and needs. A science classroom with live animals, including frogs, fish, and (to the delight of Andy) a hamster. A wonderfully clean and organized shop for working on bicycles and small motors. A well-organized vocational program where the older students go out into the community to learn jobs, from stocking shelves at the Goodwill to helping at local restaurants and small businesses. There is a piano in the cafeteria, which is more like a nice room for eating than a typical school cafeteria. They use positive reinforcement charts and paychecks and motivators. They have whiteboards installed, labs with sinks ready, and plenty of counsellors with office all along the length of the building. The teachers are friendly and seemed glad to see us. Everything was very clean. It is a beautiful school.
And we walked out, knowing Joey could not manage it. They change classes four times a day, with a very loud bell between periods, which are 90 minutes long. They have break rooms, but only one is being set up as a sensory break area (as an experiment) and all are locked, so he would have to wait for a key to access them. When we asked about math, they proudly told us they once had a kid who got all the way through Algebra II... some time ago. That would be the end of a normal math curriculum for a high school.** Red flag: bragging that ONE of your students, once upon a time, actually managed to complete a normal course of math? Not a good sign. But with the usual assurances that "they would teach what he needs," we got little else clear about the academics. No music, except as a once-a-month "club." The strict structure, the changing rooms, the long hall and wide spaces, and what space was there for 1:1 instruction? The 4-to-a-class seems great until the teacher talk about their 6-person classes, and no clear space for smaller-ratio needs. We didn't see any classroom aides, which limits flexibility. There were metal detectors and a person at the front student door, but their policy for bolting was to catch up and walk with them. No speech or occupational therapists on staff. We were told straight out and early on, they don't have students with intensive OT needs, so no OT, no gym, no sensory space.
It was a beautiful school. It was the kind of school I hope Joey could navigate, with all the trappings of a regular environment, but a lower ratio so that students could get more attention and support.
But that is not where we are. And without that sensory integration piece, no way to get there.
Andy asked questions. He giggled at the hamster. He had his eyes open. He noticed many of the lockers had no locks, and know Joey's fascination with locks, so he asked about that as an issue very early in the tour. He took a good look at the fancy kitchen. He shook hands with teachers (many of whom likely assumed he was the prospective student). If the academics were more clearly solid, it would be a good school for him. But he isn't the prospective student, he's the brother. He checked out the labs, noted the cameras (the whole building is camera-monitored, but no one was actually monitoring), looked around the classrooms. He liked the school. Thumbs-up from the kid perspective.
But he had to see our smiles vanish as soon as we were in the car and heading home. The looks between us as we realized, yes, it is a beautiful school. Had he stayed on the course he was on when he came out of second grade, we would have totally been here.
Sadly, that is not what happened.
It is a beautiful school. Joey just can't do this now. And there is something in my heart that just screamed when I realized there was no way he could do this by the fall. These are kids destined for the kinds of jobs and lives that may keep them independent (or at least marginally so), for living on their own or with minimal supports, and Joey can't join them. He can't do this. Too much stress, too much noise, and not enough brainwork, not enough sensory interventions.
There is nothing more heartbreaking than knowing this isn't where you are going. I can only blunt the pain by adding, "not yet."
I pick my best songs, and sing to Andy as he turns and tried to settle. He was the one who added the words, as we waited for Joey to come home from school, sitting on the porch. "He'd like it mom. Just... not yet."
*Yeah, you might see the problem here. Despite a wide need for such an educational environment, most schools seem more interested in dealing with academically and intellectually challenged kids, and shoving them into dead-end or highly limited employment options. Where are the options for kids with solid academics or academic talents, who still need support to manage the environment and learn coping and regulation skills? And don't tell me there aren't many- shoving a kid into "mainstream" isn't always the best option for everybody, especially if they end up being written up a lot, or spend their lives creating stomach ulcers and just trying to navigate their day. Anxiety is often ignored, ridiculed, and dismissed.
**In our system, the usual course is algebra I, geometry, algebra II, trigonometry, calculus AP. Most kids stopped after algebra II, or you had "college-bound" kids who took algebra I in eighth grade, so they would go through trig and possibly the calc AP. If you were a total math nerd like me, the school folks freaked and didn't know what to do with the college credits you took to continue your math in your senior year.
"Whatcha need, Buddy?" I try to keep my voice low; Allan is already asleep.
"I woke up. Can I have a song to go back to sleep?"
He had a long, hard day, with a lot of think about.
The one we were told he would never have to leave? Oops, they aren't going to do high school. They are going to stick to K-8. Sucks to be us.
It's like people are new here. Or to autism. Or to Joey. The point was to limit the changes, the transitions. To figure out his needs and get those met effectively. To get him settled so he could focus on important stuff- like reading. Or history. Or math.
But here we are, and we saw our first option today. There aren't many.
What we need is a school that can provide the intensive sensory integration and regulation he needs, be a safe space, and accommodate his intellect, all at the same time. He needs 1:1 academic instruction, an array of testing accommodations, and a number of classroom accommodations, including readily available space for recovery and regulation breaks. He needs academic challenges in math and science, and extra support with language-heavy tasks such as writing and responding to questions (history is a definite issue). He needs faculty that can deal with communication difficulties and learn to "speak Joey" while he learns to communicate effectively. He needs all this is a low-stress and flexible environment because of severe anxiety.*
Option 1 is a beautiful school. There is no doubt that it is designed to do what it does, and that is what it does. The walls are full of student art, and the projects are wonderful. The students have a beautiful, professional kitchen, where they learn to prepare their lunches- and we are talking about pork roast and gourmet cupcakes, food for about 60 (students and staff). Kids with more difficulty have cooking lessons after lunch, so that they can have basic independence skills. A big, beautiful classroom for life skills, with a variety of task areas, to meet a range of abilities and needs. A science classroom with live animals, including frogs, fish, and (to the delight of Andy) a hamster. A wonderfully clean and organized shop for working on bicycles and small motors. A well-organized vocational program where the older students go out into the community to learn jobs, from stocking shelves at the Goodwill to helping at local restaurants and small businesses. There is a piano in the cafeteria, which is more like a nice room for eating than a typical school cafeteria. They use positive reinforcement charts and paychecks and motivators. They have whiteboards installed, labs with sinks ready, and plenty of counsellors with office all along the length of the building. The teachers are friendly and seemed glad to see us. Everything was very clean. It is a beautiful school.
It was a beautiful school. It was the kind of school I hope Joey could navigate, with all the trappings of a regular environment, but a lower ratio so that students could get more attention and support.
But that is not where we are. And without that sensory integration piece, no way to get there.
But he had to see our smiles vanish as soon as we were in the car and heading home. The looks between us as we realized, yes, it is a beautiful school. Had he stayed on the course he was on when he came out of second grade, we would have totally been here.
Sadly, that is not what happened.
It is a beautiful school. Joey just can't do this now. And there is something in my heart that just screamed when I realized there was no way he could do this by the fall. These are kids destined for the kinds of jobs and lives that may keep them independent (or at least marginally so), for living on their own or with minimal supports, and Joey can't join them. He can't do this. Too much stress, too much noise, and not enough brainwork, not enough sensory interventions.
There is nothing more heartbreaking than knowing this isn't where you are going. I can only blunt the pain by adding, "not yet."
I pick my best songs, and sing to Andy as he turns and tried to settle. He was the one who added the words, as we waited for Joey to come home from school, sitting on the porch. "He'd like it mom. Just... not yet."
*Yeah, you might see the problem here. Despite a wide need for such an educational environment, most schools seem more interested in dealing with academically and intellectually challenged kids, and shoving them into dead-end or highly limited employment options. Where are the options for kids with solid academics or academic talents, who still need support to manage the environment and learn coping and regulation skills? And don't tell me there aren't many- shoving a kid into "mainstream" isn't always the best option for everybody, especially if they end up being written up a lot, or spend their lives creating stomach ulcers and just trying to navigate their day. Anxiety is often ignored, ridiculed, and dismissed.
**In our system, the usual course is algebra I, geometry, algebra II, trigonometry, calculus AP. Most kids stopped after algebra II, or you had "college-bound" kids who took algebra I in eighth grade, so they would go through trig and possibly the calc AP. If you were a total math nerd like me, the school folks freaked and didn't know what to do with the college credits you took to continue your math in your senior year.
Thursday, March 03, 2016
IEP Season
When Joey was small, IEP season meant weeks of angst, fear, research, late nights worrying about doing things right, doing things wrong, what to fight, what to compromise, and what Joey's future might be. The pressure for early intervention, the stress of finding ignorance where you were supposed to find wisdom, help, and support, and the absolute terror that if you took a misstep, Joey would suffer; these are things that meant weeks of preparation, power point construction, and study of goals, possibilities, services.
IEPs shouldn't be this way. Being part of the team shouldn't mean a parent should have to become a PhD in disability, education law, and service plans. Why have a team at all? As a partner, the parent has vital information about the child and the needs of the child, which need to be translated into schoolspeak and effective goals, accommodations, and programs for those children by professionals on the team. That isn't what usually happens, sadly.
And because it isn't that way, I found that all those weeks and hours were mostly a waste of time and a builder of stress, rather than being helpful to anyone, including Joey. My time and energy was better spent on Joey himself, because school just doesn't really get it. They are going to do what they are going to do, and you can have a ton of stuff added into the Present Level of Performance and have 15 goals and write out every little bit of accommodation and strategy he needs, and they are still going to call you at noon to tell you that oh, dear, he's just a mess today and ran out of the building. Really, the way we lessened the "come get him" response was to put him in a special school.
What goals does he need to meet to become independent? How much expectation can we have of him ever being independent? Since he is academically fine, will he lose support at 18? What if he isn't ready to function at 18, even if he's mastered calculus and won a Nobel Prize?
How do you get an IEP to reflect "we have to get him through puberty, people!" ?
So instead of weeks of planning, reams of paper, carefully constructed notebooks and powerpoints and statements- all of which were rewarded by rolling eyes of teachers and administrators- we look over the draft, chat a bit about how they don't address this or that, cross our fingers, and spend a couple sleepless nights realizing we should have done this or that, years ago, months ago, in this grade or that grade, but can we fix it now? Is it too late?
The angst seems to be less focused and sharp, more insidious and pervasive. It's exhaustion. Knowing that all that effort, and here we are, with the same question: what will happen when it is time for him to be an adult? Will he be able to advocate for himself and live independently, or should we start preparing for him to need support and stay with us?
It is a question no one can answer, because like all human beings, his development is going to go at his pace and in his time and with his agenda; not ours. Trying to get that translated into schoolspeak has proven elusive. What skills does he need to get to that goal? It is difficult to put a finger on them.
I can say that a person who walks up to random people in a store and tries to start of a conversation with "I lost thirty pounds in three months!" is... unexpected. A person who loses ability to self-regulate when frustrated is likely to be killed by police in this day and age, because of that same unexpectedness. Much of the fresh, bright, joyfulness that makes Joey so much Joey is going to be rejected by the wider world as strangeness, and people fear the unexpected and the strange. What will he need to survive a world that is going to be afraid of him, think he's strange, and probably assume he is stupid and less?
Yep, 2am, the morning of an IEP meeting. The one that will start his high school career. Maybe I should make a quick powerpoint...
IEPs shouldn't be this way. Being part of the team shouldn't mean a parent should have to become a PhD in disability, education law, and service plans. Why have a team at all? As a partner, the parent has vital information about the child and the needs of the child, which need to be translated into schoolspeak and effective goals, accommodations, and programs for those children by professionals on the team. That isn't what usually happens, sadly.
And because it isn't that way, I found that all those weeks and hours were mostly a waste of time and a builder of stress, rather than being helpful to anyone, including Joey. My time and energy was better spent on Joey himself, because school just doesn't really get it. They are going to do what they are going to do, and you can have a ton of stuff added into the Present Level of Performance and have 15 goals and write out every little bit of accommodation and strategy he needs, and they are still going to call you at noon to tell you that oh, dear, he's just a mess today and ran out of the building. Really, the way we lessened the "come get him" response was to put him in a special school.
What goals does he need to meet to become independent? How much expectation can we have of him ever being independent? Since he is academically fine, will he lose support at 18? What if he isn't ready to function at 18, even if he's mastered calculus and won a Nobel Prize?
How do you get an IEP to reflect "we have to get him through puberty, people!" ?
So instead of weeks of planning, reams of paper, carefully constructed notebooks and powerpoints and statements- all of which were rewarded by rolling eyes of teachers and administrators- we look over the draft, chat a bit about how they don't address this or that, cross our fingers, and spend a couple sleepless nights realizing we should have done this or that, years ago, months ago, in this grade or that grade, but can we fix it now? Is it too late?
The angst seems to be less focused and sharp, more insidious and pervasive. It's exhaustion. Knowing that all that effort, and here we are, with the same question: what will happen when it is time for him to be an adult? Will he be able to advocate for himself and live independently, or should we start preparing for him to need support and stay with us?
It is a question no one can answer, because like all human beings, his development is going to go at his pace and in his time and with his agenda; not ours. Trying to get that translated into schoolspeak has proven elusive. What skills does he need to get to that goal? It is difficult to put a finger on them.
I can say that a person who walks up to random people in a store and tries to start of a conversation with "I lost thirty pounds in three months!" is... unexpected. A person who loses ability to self-regulate when frustrated is likely to be killed by police in this day and age, because of that same unexpectedness. Much of the fresh, bright, joyfulness that makes Joey so much Joey is going to be rejected by the wider world as strangeness, and people fear the unexpected and the strange. What will he need to survive a world that is going to be afraid of him, think he's strange, and probably assume he is stupid and less?
Yep, 2am, the morning of an IEP meeting. The one that will start his high school career. Maybe I should make a quick powerpoint...
Sunday, January 31, 2016
Sparkle in Aisle 3
It had been a hard morning.
It was the kind of day where you thought you were going someplace fun, only to find that half the place was closed, the other half too loud, and the claw machines just would NOT grab.
So I got everybody home and re-settled, the oceans calmed, and the lions tamed. After all, I had promised Joey could go grocery shopping with me, and I couldn't do that if he was in melt down mode. Even brittle mode would not work.
He wanted to go to the grocery so he could pick out "healthy food." Joey has been on a weight-loss kick, and he's been working hard to get his exercise and movement up and his diet healthy. Although the middle-of-the-night eating is still an issue, we have been working hard, and he has been working hard- down 20 pounds, and he's terribly proud of it. The last two weeks have been school-free, between him being sick and the Snowzilla of 2016, so he is really ready to go back- and has decided healthy lunches are to be part of the return to school. Lettuce, celery, carrots, low-fat cheese, sunflower seeds, and apples were on his list, though he also asked for chocolate milk, peanut M&Ms (peanuts are healthy, Mom!), and ice cream.
Once he declared himself ready, off we went. By the time we got to the store, he was positively beaming, though scripting. Excitement can do that. He was going to go to the store with Mom, and pick out his very own food for his very own lunches for school and he's going back to school tomorrow- very exciting. Across the parking lot, we talked about lettuce and celery and he doesn't like tomatoes, but trying some roll-up sandwiches might be fun, and no thanks to the salad dressing.
Once we got inside, Joey was totally on. He walked right up to the first lady he saw, a small woman trying to pick out crackers, and started.
"What's zero divided by zero?" he asked proudly, with his big smile. The lady gave him an odd look, so he added, "You can't divide by zero!"
The next lady chuckled, and played along; she got about five minutes of instruction on division by zero, multiplication by zero, and multiplication generally (77x12 is 924! 120 x 4 is 480, because 12 x 4 is 48, and then you have the zero, so you add on the zero!).
As we picked out cheese, and lettuce, and apples, I just let Joey be Joey. I let him talk to people, because he loves to talk to people and engage people. Some answered him and spoke with him a little. Some did not. No one was rude, or mean, or even just ignored him; they at least turned their head and smiled and nodded. So Joey let the sunshine out, and filled the whole store with it. I watched and listened to him in his joy, his desire to connect, his shiny, sparkly personality that loves all the world around him.
I wish we had more days like this. This is my son.
You're welcome.
It was the kind of day where you thought you were going someplace fun, only to find that half the place was closed, the other half too loud, and the claw machines just would NOT grab.
So I got everybody home and re-settled, the oceans calmed, and the lions tamed. After all, I had promised Joey could go grocery shopping with me, and I couldn't do that if he was in melt down mode. Even brittle mode would not work.
He wanted to go to the grocery so he could pick out "healthy food." Joey has been on a weight-loss kick, and he's been working hard to get his exercise and movement up and his diet healthy. Although the middle-of-the-night eating is still an issue, we have been working hard, and he has been working hard- down 20 pounds, and he's terribly proud of it. The last two weeks have been school-free, between him being sick and the Snowzilla of 2016, so he is really ready to go back- and has decided healthy lunches are to be part of the return to school. Lettuce, celery, carrots, low-fat cheese, sunflower seeds, and apples were on his list, though he also asked for chocolate milk, peanut M&Ms (peanuts are healthy, Mom!), and ice cream.
Once he declared himself ready, off we went. By the time we got to the store, he was positively beaming, though scripting. Excitement can do that. He was going to go to the store with Mom, and pick out his very own food for his very own lunches for school and he's going back to school tomorrow- very exciting. Across the parking lot, we talked about lettuce and celery and he doesn't like tomatoes, but trying some roll-up sandwiches might be fun, and no thanks to the salad dressing.
Once we got inside, Joey was totally on. He walked right up to the first lady he saw, a small woman trying to pick out crackers, and started.
"What's zero divided by zero?" he asked proudly, with his big smile. The lady gave him an odd look, so he added, "You can't divide by zero!"
The next lady chuckled, and played along; she got about five minutes of instruction on division by zero, multiplication by zero, and multiplication generally (77x12 is 924! 120 x 4 is 480, because 12 x 4 is 48, and then you have the zero, so you add on the zero!).
As we picked out cheese, and lettuce, and apples, I just let Joey be Joey. I let him talk to people, because he loves to talk to people and engage people. Some answered him and spoke with him a little. Some did not. No one was rude, or mean, or even just ignored him; they at least turned their head and smiled and nodded. So Joey let the sunshine out, and filled the whole store with it. I watched and listened to him in his joy, his desire to connect, his shiny, sparkly personality that loves all the world around him.
I wish we had more days like this. This is my son.
You're welcome.
Sunday, December 27, 2015
Saturday, August 29, 2015
Flowers in a Bottle
When you reach those years of hormones, aggression, confusion, frustration, wild swings, and moody depressions, it is a good idea to keep something to remind you that you aren't talking about your hormones. It isn't your fault. And you are still a human being, an adult human being who is allowed to like a little something for you.
Mine is a little bottle of perfume.
I'm not a big wearer of beauty products. I don't own any make-up, and haven't worn any since I got married. Well, maybe once since then, I'm not sure; I think I put some on for a job interview once, maybe twice. I'd have to go out and buy it if I wanted to wear any today. I'm not a fashionista. I used to wear jewelry, and plenty of it, but with babies, you have to mostly lay off. My husband gets me some beautiful pieces. Every once in a while I sneak into my jewelry box and watch them sparkle a little, because they are just like his eyes. I don't get to wear them much. Perfume was something else I didn't wear much. I had some nice ones. I wore Anais Anais when I was much younger, and I liked Sunflowers a lot; my sandalwood and mango oils were always nice. For a while I had a kind of spritzer of lilac, and one of honeysuckle, that were lovely, but the scent doesn't last long with those. I like rose water, too. But I could never finish a bottle quick enough, because I just don't wear a lot of anything. Not even perfume.
With showers not as prevalent as they once were, perfumes became more important- after the shower, it was an indulgence, a statement of being human again, to use those spritzers. Ready to jump back into adulting, while smelling super good.
My mom wore KL when I was growing up... on special occasions. Whenever the KL went on, something good was about to happen. Dinner out. See the grandparents. Going shopping. She would dress up and look beautiful and smell awesome, and that was my mom. I can detect KL from a room away, and think, "Mom!!!"
I hope my boys will someday get that whiff of Daisy and think, "Is mom home?"
Mom bought me the first bottle, and it was love at first sniff, after the shower. It had been a rough day, and it was a few minutes I stole for a shower, with Allan home and kids distracted. A few spritzes later, and I was ready to adult again.
And that was when I thought, you know those folks who go about with too much perfume or cologne or whatever on? They must think they smell super. And I bet it makes them feel good to smell super. It must help them be ready to adult again. So I gave myself some more spritzes.
Because the perfume ain't for you. I like it. It smells fantastic. And it's for ME.
Mine is a little bottle of perfume.
I'm not a big wearer of beauty products. I don't own any make-up, and haven't worn any since I got married. Well, maybe once since then, I'm not sure; I think I put some on for a job interview once, maybe twice. I'd have to go out and buy it if I wanted to wear any today. I'm not a fashionista. I used to wear jewelry, and plenty of it, but with babies, you have to mostly lay off. My husband gets me some beautiful pieces. Every once in a while I sneak into my jewelry box and watch them sparkle a little, because they are just like his eyes. I don't get to wear them much. Perfume was something else I didn't wear much. I had some nice ones. I wore Anais Anais when I was much younger, and I liked Sunflowers a lot; my sandalwood and mango oils were always nice. For a while I had a kind of spritzer of lilac, and one of honeysuckle, that were lovely, but the scent doesn't last long with those. I like rose water, too. But I could never finish a bottle quick enough, because I just don't wear a lot of anything. Not even perfume.
With showers not as prevalent as they once were, perfumes became more important- after the shower, it was an indulgence, a statement of being human again, to use those spritzers. Ready to jump back into adulting, while smelling super good.
My mom wore KL when I was growing up... on special occasions. Whenever the KL went on, something good was about to happen. Dinner out. See the grandparents. Going shopping. She would dress up and look beautiful and smell awesome, and that was my mom. I can detect KL from a room away, and think, "Mom!!!"
I hope my boys will someday get that whiff of Daisy and think, "Is mom home?"
Mom bought me the first bottle, and it was love at first sniff, after the shower. It had been a rough day, and it was a few minutes I stole for a shower, with Allan home and kids distracted. A few spritzes later, and I was ready to adult again.
And that was when I thought, you know those folks who go about with too much perfume or cologne or whatever on? They must think they smell super. And I bet it makes them feel good to smell super. It must help them be ready to adult again. So I gave myself some more spritzes.
Because the perfume ain't for you. I like it. It smells fantastic. And it's for ME.
Saturday, July 25, 2015
Summer
Here we are, knee-deep into it, and where have the posts been? It is getting harder to decide what to post. This has been a bit of a crazy summer, and jam-packed with boy adventures.
Summer is always an odd time for us. Joey's schedule is different. While having a schedule at all is always good, the ups and downs of things being different remains. We have a new teacher this summer, and we originally were told he would definitely be Joey's teacher in the fall; now he has been offered a contract with the regular school system, so we don't know- we have to wait and see what the new teacher decides to do. Will we have yet another transition? How far will Joey be set back if we do?
So the best thing is to fill what we can with other activities, and keep him busy and thinking. It is a battle- Joey versus Anxiety, and we want Joey to win.
Our arsenal is not without tools and weapons against the foe: after all, we have The Pool. Joining a local private pool has been a really good investment for us. Yes, there are some people there who really need some education, but most of the folks now know Joey, so at least they aren't blindsided by him.
It is a great way to keep cool, get in lots of exercise, and have lots of fun. Most years the boys have kind of done their own thing in the pool unless they were the only ones there (which happens a bit when you're in a small, private pool)- but this year, they have stuck close to each other. This is not always a good thing, as like all siblings, they also get on each other's nerves. But for the better part, we have brothers finding ways to connect and play together.
A new tool in our bag is Funland, a local arcade and amusement park. It includes video games, claw machines, those things where you push the coins along the levels (my dad used to ROCK at those), and some rides. I think they also have mini-golf. Some years ago, when we first tried it, disaster ensued- too loud, too flashy, too everything. We stuck to our beloved Chuck E Cheese (which, you should know, serves beer). However, there are not a lot of teenagers who hang out at the House of Mouse- so we eased our way into another go at the bigger, noisier, crazier step up in the world.
The lure was bumper cars and go-karts. Joey's love of Mario won at last.
Joey also had his beloved theater camp. The last couple of years were not a huge success, with the changes in the staff and the issues with dance camps and art camps and Joey's anxiety. This year, the program we had been participating in more than doubled the price, so we were disappointed to have to skip... until we found that the lady who ran the other program before all the mess had started a new program. Better yet, she had secured funding so that all the campers were able to participate for free.
Joy ensued.
Joey was back on stage, in a great Sea Adventure!
He did sea creature dances, and made his very own Koopa Troopa costume (OK, it was sea turtle costume... but now that the play is over, it is back to Mario!), and enjoyed himself thoroughly. A big thank you to STEP-VA and Ms. Monroe, for giving Joey an anxiety break for a week. He needed the breath of air.
Andy also had a camp, so we had some adventures that were just Joey and Mom. I don't get a lot of Joey Time now- school, school, school, all the time. His favorite adventure was going to the pet store, where he could check out the kitties for adoption (and beg for one), look at the fish, and check out the small pets (you know... mice. Guinea pigs. SNAKES.)
We also took a trip out to see Allan's family in Tennessee. Long drives are always an adventure, but the treat at the end of the road was well worth it.
We spent a good bit of time hanging out with Granny Ann, which mostly consisted of playing Wii, petting Granny Ann's cats, and setting off fireworks that are illegal in Virginia. They were pretty cool.
And so the summer is moving along, with school days, pool days, and new headgear. The beach isn't happening until September this year, so we have plenty of lazy days ahead. More adventures to be had, more world to explore, and more Minecraft to build.
Ah, the life of a Boy.
 |
| Off on summer adventures! |
So the best thing is to fill what we can with other activities, and keep him busy and thinking. It is a battle- Joey versus Anxiety, and we want Joey to win.
 |
| Secret Agent Boys. Not so secret, actually. |
It is a great way to keep cool, get in lots of exercise, and have lots of fun. Most years the boys have kind of done their own thing in the pool unless they were the only ones there (which happens a bit when you're in a small, private pool)- but this year, they have stuck close to each other. This is not always a good thing, as like all siblings, they also get on each other's nerves. But for the better part, we have brothers finding ways to connect and play together.
 |
| Bumper cars! |
 |
| Shy Guy wins the race on the Standard Car. |
The lure was bumper cars and go-karts. Joey's love of Mario won at last.
Joey also had his beloved theater camp. The last couple of years were not a huge success, with the changes in the staff and the issues with dance camps and art camps and Joey's anxiety. This year, the program we had been participating in more than doubled the price, so we were disappointed to have to skip... until we found that the lady who ran the other program before all the mess had started a new program. Better yet, she had secured funding so that all the campers were able to participate for free.
 |
| Boy in his Element |
Joy ensued.
Joey was back on stage, in a great Sea Adventure!
 |
| Proud Boy. Proud Dad. |
 |
| He named it "Slippy." We did NOT take it home. |
 |
| Taking photos on the ipod. |
 |
| Hi, Fish! |
 |
| Hi, Aunt Emily! |
 |
| We had the biggest sparklers we have ever seen. |
 |
| Showing Granny Ann how to shoot tanks. |
Joey has decided Allan grew up in a mansion. I think he enjoyed himself.
And so the summer is moving along, with school days, pool days, and new headgear. The beach isn't happening until September this year, so we have plenty of lazy days ahead. More adventures to be had, more world to explore, and more Minecraft to build.
Ah, the life of a Boy.
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