Ben is asking questions!
"What does a squirrel say?"
"What are you going to do after I go to sleep? Are you going to play?"
"What song is that?"
"Where are we going?"
"What is a solar system?"
"What are we going to do today?"
"Where is Daddy?"
"What are you cooking for me?"
"What is that?" (Which started out as, "What that is?" and was so cute I could hardly stand it.)
And he always asks these questions (and many more) with this look on his face that is a mixture of curiosity and amusement, like "A ha! I now have a way of obtaining information from you! Over and over again!"
Why is this significant, since 'all' kids ask questions?
Because I was afraid he wouldn't. Ever. I have mentioned before that Ben didn't talk until he was 3&1/2 and that, when he began talking, there was an explosion of words and sentences. We went from no verbal communication to a ton of it in just a month. But there were no questions. There were lots of words and sentences, but even when he wanted something he would say, "I need juice," for example. We modeled questions and tried to prompt him to say, "May I please have some juice?" and sometimes he would phrase it that way to ensure he got what he wanted, but he did not form questions on his own until now, almost 2 years later.
I was so thrilled he was talking that I didn't give this issue much thought until his diagnosis last summer, but when I began to read up on the subject I discovered that many children on the spectrum never ask questions. Often, they are so locked in their own world that they don't ever realize or become aware that they can ask questions to get information, and sometimes they aren't even aware of and connected to others enough to want information from them. This is when I began to worry about Ben's lack of questioning. I longed to hear the endless string of "Why?" questions that cause some parents to complain. I longed for my child to be curious enough to reach out for answers, and I was afraid he would not be. Ben is fairly high-functioning, but sometimes the Autism slaps me in the face. Sometimes, it's visible and undeniable. He didn't ask questions when other kids his age were full of them, and that was clear and alarming.
This question-asking, as simple as it may seem, gives me a huge amount of hope that he will NOT be limited by this syndrome. It gives me hope that he is connected to other people and that he is present and aware here in the world with the rest of us. He is reaching out to others for information that he wants, and he makes eye contact when he does it. He now has the ability to reach into the world and connect to it and to everyone else, and that reassures me so much there aren't words to describe it or measure it. A simple question from him gives me hope that he will be able to complete his education and go to college and have a career he loves and sustain relationships with others. It gives me hope that this is the tip of the iceberg and that his communication skills will continue to flourish.
He is not yet asking all of those "Why?" questions, but that may very well be next. I welcome them and look forward to answering every single one without complaint.
Sunday, August 14, 2011
Sunday, July 17, 2011
An Act of Kindness
A few months ago, I posted about a very large, messy accident Ben had involving a Pacific Ocean of poop in one half of my home and then, a while after that, I posted about our long adventure with potty training. I briefly mentioned borrowing my parents' carpet cleaner to cope with the messes this adventure often left on the carpet. Today, out of nowhere, I was given the gift of my very own fancy, powerful, glorious, brand-new carpet cleaner.
The most surprising part of this gift is that it did not come from my doting parents or my generous extended family who often thinks of us and gives us nice gifts (like Ben's new black ocarina that he is ever so fond of--thanks Aunt Judy!), but from someone who has never met me or Ben. This person knew my mom in high school and reads my blog about Ben, and she very thoughtfully and sweetly decided to give me a carpet cleaner that she had bought but never used and had never even removed from the box.
I never know when Ben will have an accident. They generally happen at an inopportune time, but he can't help that. He is getting better about potty training, but those accidents still happen from time to time. He is also still struggling with his motor skills, which results in messes as he spills things. Once, before he became verbal and couldn't communicate his wants and needs with words, he pulled a large pitcher of iced tea from the fridge to show me he wanted some and accidentally dumped the whole thing on the carpet in the dining room one hour before his birthday party. And, of course, there was also the incident of the perfectly straight black crayon lines.
My parents have always willingly loaned me their carpet cleaner and have allowed me tohold it hostage keep it for long periods of time, but now they can keep theirs and I will have one whenever I need it for crayon, iced tea, grape juice, spaghetti sauce, poop, chocolate Carnation Instant Breakfast, and whatever else might happen to land on the carpet.
To the person who gave me this gift: thank you for helping to make my life easier and taking some of the stress out of helping Ben with his struggles. I appreciate your thoughtfulness and generosity more than I can express, and I am very touched that you thought to give me such a big gift that will help so much around here. Thank you for thinking of us, and thank you for your kindness.
The most surprising part of this gift is that it did not come from my doting parents or my generous extended family who often thinks of us and gives us nice gifts (like Ben's new black ocarina that he is ever so fond of--thanks Aunt Judy!), but from someone who has never met me or Ben. This person knew my mom in high school and reads my blog about Ben, and she very thoughtfully and sweetly decided to give me a carpet cleaner that she had bought but never used and had never even removed from the box.
I never know when Ben will have an accident. They generally happen at an inopportune time, but he can't help that. He is getting better about potty training, but those accidents still happen from time to time. He is also still struggling with his motor skills, which results in messes as he spills things. Once, before he became verbal and couldn't communicate his wants and needs with words, he pulled a large pitcher of iced tea from the fridge to show me he wanted some and accidentally dumped the whole thing on the carpet in the dining room one hour before his birthday party. And, of course, there was also the incident of the perfectly straight black crayon lines.
My parents have always willingly loaned me their carpet cleaner and have allowed me to
To the person who gave me this gift: thank you for helping to make my life easier and taking some of the stress out of helping Ben with his struggles. I appreciate your thoughtfulness and generosity more than I can express, and I am very touched that you thought to give me such a big gift that will help so much around here. Thank you for thinking of us, and thank you for your kindness.
Thursday, June 23, 2011
"Different, not less."
Since it is summer break, I occasionally have a bit of this enigma some people call spare time, and in order to spend some of this glorious spare time, Ben's dad rented the movie Temple Grandin and we finally got to watch it. I have read articles by Temple Grandin and watched her speeches on line, but I had not had the chance to see the movie until now.
I am not a professional movie reviewer, and my taste in movies is probably questionable at best, but you should really see it if you haven't. You really, really should.
If you aren't familiar with Temple Grandin, she is a woman with Autism whose mother was told to institutionalize her when she was diagnosed at the age of four in the 1950's. The doctor called it "infantile schizophrenia" (which really made me angry) and thought that children with it could never talk or take care of themselves or learn. Her mother (played by Julia Ormond in the movie; Claire Danes plays Temple) refused to follow this advice, worked tirelessly with her on speech, manners, rules, and many other issues, and had Temple attend a boarding school and then college. Temple is very successful; she has earned her PhD in animal science and is a professor at Colorado State and has famously redesigned slaughter houses to create safe, humane, environments for the animals that are also more efficient and has written many books about that and also about Autism, including The Way I See It. She is an inspiration in herself, but this movie is really something.
I cannot get over how well it was done, and how thoughtfully she is portrayed, both as an awesomely successful woman and as a person with Autism. It shows her social awkwardness, her differences from other people, the bullying and teasing she was subjected to for being a "freak," and the way other people couldn't understand her interests and focus, but it also showed how she thinks in pictures by presenting a series of photographs to represent that and it amplified different sounds to show what would be uncomfortable and frightening to her. It showed her sensory issues, like the "hug machine" she designed and built for herself because she needed the pressure of a hug to calm herself but couldn't tolerate human touch, and also her inability to eat food with texture, other than that of yogurt and jello.
It also showed how much of a difference small gestures of kindness by others made to her life.
I spent a large part of the movie comparing her to Ben, for some reason, perhaps because I am constantly trying to understand the differences in symptoms and gauge Ben's. There were a lot of differences because he is very high-functioning and she is more classically Autistic, but there were a great number of similarities, too: the intense focus and inability to be side tracked, the lack of understanding of social cues, and the need for pressure, which Ben satisfies with back rubs, a bean bag chair, or his weighted blanket. But I absolutely began to cry during the scene of the movie where she leaned toward her mother without touching her so her mother could hug her.
Ben does this. Not with me or his dad or his grandparents, but he definitely does it with people he doesn't know as well or see as often. Ben has always been affectionate and loving, always, but with less familiar people, he is more guarded in many ways. He also gives what we call "head kisses." If you ask him for a kiss and you are not immediate family, he will most likely lean toward you with his head down so that you may kiss the top of his head. He complies, but in a way that is comfortable for him. I don't know why that scene made me cry, maybe because it was at the end of an emotional movie, or maybe because it reminded me so much of my sweet Ben, but it did make me cry. The movie as a whole gave me a great deal of hope for Benjamin.
See the movie. It's incredibly well done, Claire Danes does an outstanding job, and it is a very helpful tool for spreading some awareness that people with Autism are different, but definitely not less, than others.
I am not a professional movie reviewer, and my taste in movies is probably questionable at best, but you should really see it if you haven't. You really, really should.
If you aren't familiar with Temple Grandin, she is a woman with Autism whose mother was told to institutionalize her when she was diagnosed at the age of four in the 1950's. The doctor called it "infantile schizophrenia" (which really made me angry) and thought that children with it could never talk or take care of themselves or learn. Her mother (played by Julia Ormond in the movie; Claire Danes plays Temple) refused to follow this advice, worked tirelessly with her on speech, manners, rules, and many other issues, and had Temple attend a boarding school and then college. Temple is very successful; she has earned her PhD in animal science and is a professor at Colorado State and has famously redesigned slaughter houses to create safe, humane, environments for the animals that are also more efficient and has written many books about that and also about Autism, including The Way I See It. She is an inspiration in herself, but this movie is really something.
I cannot get over how well it was done, and how thoughtfully she is portrayed, both as an awesomely successful woman and as a person with Autism. It shows her social awkwardness, her differences from other people, the bullying and teasing she was subjected to for being a "freak," and the way other people couldn't understand her interests and focus, but it also showed how she thinks in pictures by presenting a series of photographs to represent that and it amplified different sounds to show what would be uncomfortable and frightening to her. It showed her sensory issues, like the "hug machine" she designed and built for herself because she needed the pressure of a hug to calm herself but couldn't tolerate human touch, and also her inability to eat food with texture, other than that of yogurt and jello.
It also showed how much of a difference small gestures of kindness by others made to her life.
I spent a large part of the movie comparing her to Ben, for some reason, perhaps because I am constantly trying to understand the differences in symptoms and gauge Ben's. There were a lot of differences because he is very high-functioning and she is more classically Autistic, but there were a great number of similarities, too: the intense focus and inability to be side tracked, the lack of understanding of social cues, and the need for pressure, which Ben satisfies with back rubs, a bean bag chair, or his weighted blanket. But I absolutely began to cry during the scene of the movie where she leaned toward her mother without touching her so her mother could hug her.
Ben does this. Not with me or his dad or his grandparents, but he definitely does it with people he doesn't know as well or see as often. Ben has always been affectionate and loving, always, but with less familiar people, he is more guarded in many ways. He also gives what we call "head kisses." If you ask him for a kiss and you are not immediate family, he will most likely lean toward you with his head down so that you may kiss the top of his head. He complies, but in a way that is comfortable for him. I don't know why that scene made me cry, maybe because it was at the end of an emotional movie, or maybe because it reminded me so much of my sweet Ben, but it did make me cry. The movie as a whole gave me a great deal of hope for Benjamin.
See the movie. It's incredibly well done, Claire Danes does an outstanding job, and it is a very helpful tool for spreading some awareness that people with Autism are different, but definitely not less, than others.
Monday, June 20, 2011
The Long and the Short of It
Hi! I haven't been here in awhile, despite my good intentions. It's just that when school let out I lost my motivation. I'm trying to find it, but I lack the motivation needed to do so. Ha ha. Ha. I see Canada and Russia have visited this little blog quite a bit. Other countries too, but not as much as Canada and Russia, so hello there to them.
You know how when you find out you are going to be a parent, you read all of those books about all of the things you should worry about when you try to raise your child? And you know how those books tell you there are BILLIONS of things to worry about? Like what might happen to your child's brain if you don't nurse them until they are old enough to tell you they would prefer a juice box, the two hundred kinds of harmful plastic that everything in the world is made with yet will give your child cancer if they use a sippy cup made with it, and the lead paint that used to be on your window sills but was scraped off twenty years ago? Come to find out, they managed to leave out some things, like SHORT SLEEVE PHOBIA.
Sleeves, specifically short ones, caused quite a ruckus around here for quite awhile. Ben was used to wearing long ones, so when the Panhandle weather decided to swing warm, he did not want to wear short ones AT ALL, and then just when I got him sort of used to the idea of short sleeves, the weather would swing back to cold and he would get to wear long ones again. That may not seem like much of an issue, but trying to put a short-sleeved shirt on that child made him scream, cry, and wrench the shirt off of himself as if it had a prickly thorn lining. And this didn't happen once or twice, but every day for about a month.
Last spring, we had one instance of not wanting short sleeves and then he got over it. Last fall, we had a few mild instances of not wanting long sleeves and then he got over it. I was completely unprepared for the battle that short sleeves turned into this spring, and also the emotional wretchedness that came along with it.
I knew this was because of the sensory issues that plague most children on the spectrum, and I knew that to Ben, the sleeves were scary and/or uncomfortable because they were different from what he had been wearing for several months. I don't want my child to be alarmed, uncomfortable, or scared, but at the same time, I don't want him to get used to avoiding uncomfortable things completely. Lots of things are going to be uncomfortable to him, and lots of new things are going to be scary, but I was faced with this quandary that parents of children with Autism end up in: give in or push the issue?
I kind of wanted to give in. Maybe Ben could just always wear long sleeves, even though the temperature does hit over 100 here in June. Maybe being too hot would make him want short sleeves. Maybe giving into this one thing wouldn't set the stage for having to give into all things because he screamed and cried and didn't want to try them.
But they are just sleeves. Not snakes, not sky diving, not asparagus. Just sleeves. My main goals for Ben are for him to grow up to be functional and happy, and giving up and letting him wear long sleeves when the weather clearly called for something else just didn't seem in step with helping him reach those goals.
His wonderful occupational therapist was a bit stumped by it as well. She suggested we trim the sleeves of the shirts bit by bit to get him used to it, but I had an issue with chopping up perfectly good clothing. I searched online and found nothing but either what the therapist had suggested or just ignoring it and letting him burn up in long sleeves in Texas.
So I did something else. Something that I do not recommend trying at home. Something that I hope came from my love for Ben and faith in his ability to adapt and not from some horrible motherishness on my part.
I hid all of the long-sleeved shirts and all of the long-sleeved jammies, announced that they were gone because the weather was warm now, and MADE HIM WEAR SHORT-SLEEVED PAJAMAS. He screamed, cried, removed the T-shirt over and over, and I hugged him to me and rocked him in the recliner under his weighted blanket and just let him scream it out while desperately hoping I wasn't scarring him for life.
The next morning, he woke up all smiles, did not mention the horrid T-shirt his mean mother made him sleep in, and calmly picked out a short-sleeved polo shirt with a dinosaur on it to wear to school that day. He now occasionally mentions wanting long sleeves when he gets dressed, and almost always asks for long-sleeved pajamas, but aside from tugging at the shirt a bit when he first puts it on he is fine. He even wears sleeveless shirts on occasion.
Did I do the right thing? I have no idea. Would I recommend it to others? Probably not. But, as I am learning more and more, every child with Autism is different, has different issues, and needs different things. I didn't know what to do, so I did what occurred me and it just happened to work out this time. I am happy he gets dressed with minimal problems, but I am totally dreading the fall. I did my best, and no matter what happens or comes up in the future, I will do my best for Ben, even if that means not knowing what to do and just having to feel my way through a situation.
Below is a series of pictures illustrating what occurs when I ask Ben to smile nicely for a picture to document the occasion of wearing a sleeveless shirt, or to document any occasion for that matter, simply because he thoroughly enjoys refusing to cooperate with me. He's a mess, but I sure do love him.
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You know how when you find out you are going to be a parent, you read all of those books about all of the things you should worry about when you try to raise your child? And you know how those books tell you there are BILLIONS of things to worry about? Like what might happen to your child's brain if you don't nurse them until they are old enough to tell you they would prefer a juice box, the two hundred kinds of harmful plastic that everything in the world is made with yet will give your child cancer if they use a sippy cup made with it, and the lead paint that used to be on your window sills but was scraped off twenty years ago? Come to find out, they managed to leave out some things, like SHORT SLEEVE PHOBIA.
Sleeves, specifically short ones, caused quite a ruckus around here for quite awhile. Ben was used to wearing long ones, so when the Panhandle weather decided to swing warm, he did not want to wear short ones AT ALL, and then just when I got him sort of used to the idea of short sleeves, the weather would swing back to cold and he would get to wear long ones again. That may not seem like much of an issue, but trying to put a short-sleeved shirt on that child made him scream, cry, and wrench the shirt off of himself as if it had a prickly thorn lining. And this didn't happen once or twice, but every day for about a month.
Last spring, we had one instance of not wanting short sleeves and then he got over it. Last fall, we had a few mild instances of not wanting long sleeves and then he got over it. I was completely unprepared for the battle that short sleeves turned into this spring, and also the emotional wretchedness that came along with it.
I knew this was because of the sensory issues that plague most children on the spectrum, and I knew that to Ben, the sleeves were scary and/or uncomfortable because they were different from what he had been wearing for several months. I don't want my child to be alarmed, uncomfortable, or scared, but at the same time, I don't want him to get used to avoiding uncomfortable things completely. Lots of things are going to be uncomfortable to him, and lots of new things are going to be scary, but I was faced with this quandary that parents of children with Autism end up in: give in or push the issue?
I kind of wanted to give in. Maybe Ben could just always wear long sleeves, even though the temperature does hit over 100 here in June. Maybe being too hot would make him want short sleeves. Maybe giving into this one thing wouldn't set the stage for having to give into all things because he screamed and cried and didn't want to try them.
But they are just sleeves. Not snakes, not sky diving, not asparagus. Just sleeves. My main goals for Ben are for him to grow up to be functional and happy, and giving up and letting him wear long sleeves when the weather clearly called for something else just didn't seem in step with helping him reach those goals.
His wonderful occupational therapist was a bit stumped by it as well. She suggested we trim the sleeves of the shirts bit by bit to get him used to it, but I had an issue with chopping up perfectly good clothing. I searched online and found nothing but either what the therapist had suggested or just ignoring it and letting him burn up in long sleeves in Texas.
So I did something else. Something that I do not recommend trying at home. Something that I hope came from my love for Ben and faith in his ability to adapt and not from some horrible motherishness on my part.
I hid all of the long-sleeved shirts and all of the long-sleeved jammies, announced that they were gone because the weather was warm now, and MADE HIM WEAR SHORT-SLEEVED PAJAMAS. He screamed, cried, removed the T-shirt over and over, and I hugged him to me and rocked him in the recliner under his weighted blanket and just let him scream it out while desperately hoping I wasn't scarring him for life.
The next morning, he woke up all smiles, did not mention the horrid T-shirt his mean mother made him sleep in, and calmly picked out a short-sleeved polo shirt with a dinosaur on it to wear to school that day. He now occasionally mentions wanting long sleeves when he gets dressed, and almost always asks for long-sleeved pajamas, but aside from tugging at the shirt a bit when he first puts it on he is fine. He even wears sleeveless shirts on occasion.
Did I do the right thing? I have no idea. Would I recommend it to others? Probably not. But, as I am learning more and more, every child with Autism is different, has different issues, and needs different things. I didn't know what to do, so I did what occurred me and it just happened to work out this time. I am happy he gets dressed with minimal problems, but I am totally dreading the fall. I did my best, and no matter what happens or comes up in the future, I will do my best for Ben, even if that means not knowing what to do and just having to feel my way through a situation.
Below is a series of pictures illustrating what occurs when I ask Ben to smile nicely for a picture to document the occasion of wearing a sleeveless shirt, or to document any occasion for that matter, simply because he thoroughly enjoys refusing to cooperate with me. He's a mess, but I sure do love him.
Sunday, May 22, 2011
The Potty Endeavor
I am inclined to write about potty training just now because one of my FB friends recently posted a status about having seen a mother shopping with an older-looking child in a diaper with a pacifier. He conceded that the child "might have something wrong with him", but declared that to him, that is "just laziness on the parents' part."
Ahem. Let me find my soapbox and get into position. Okay, I'm ready.
At our house, potty training has been a three-year-long affair including books, multiple family members, therapists, teachers, stickers, M&Ms, a musical potty chair, a social story, a special poster, and more Pull-Ups and pairs of undies than I can count. We have had successes, messy failures, plateaus, and disasters which have required rewards, consequences, and tons of scrubbing. And while Ben is now five and it is still a work in progress, I don't ever remember lounging around and declaring, "Aw, I don't feel like messin' with this today. Here, just wear a diaper." Not ever.
Ben and I began potty training when he was two years and three months old. I started right after school let out, armed with two children's books called "The Potty Train" and "The Potty Book", an instructional book about training, a musical potty chair, and little blue and white star-printed undies. I thought for sure we would master that in a summer since I planned to work on it every day, and I was looking forward to having it over with.
Ben liked the potty just fine, and he never protested it much. Our days were filled with trying every thirty minutes and celebrating successes with cheers and hugs. Accidents were dealt with by firmly telling him no, and what was to be done instead. We tried and tried, but it just never went anywhere. If he just happened to be on the potty when he needed to go, he would and that was great, but if he wasn't then he had an accident. This was way before his diagnosis, and I had no idea why he couldn't indicate when he needed to go or why he just didn't seem to care. His speech therapist (because he was non-verbal until he was 3&1/2) worked on signs for pottying with us, and I took some comfort in the fact that my Aunt Lenis, mother of three and sitter of many, told me not to stress because little boys just didn't give a rip and that I would probably be packing little pairs of undies in my purse for many years to come.
But mainly, since mothers have such guilty bones, I felt like a failure. I had done it wrong. I had misread Ben and thought he was ready when he wasn't. I wasn't consistent enough, smart enough, etc, etc, etc.
School started again, and Ben began daycare in Pull-Ups instead of undies as I had hoped. We still worked on it and we still had no progress. I initiated the use of a sticker chart and a clapping ritual for his successes, and built up the greatness of using a potty. We spent a lot of time working on it, to the point that I often felt like my life revolved around poop. We tried everything we could think of, and almost everything anyone suggested. Potty training was an arduous battle, punctuated with successes that gave me great hope, followed by massive failures that dashed it.
I don't think I ever could have been called lazy, though I saw the smirks of other parents at Mommy and Me Gymnastics when they saw the waistband of Ben's Pull-Up peek above his shorts, or when I bought those Pull-Ups with Ben in the cart, and the cashier would cluck, "He's such a BIG boy." And, of course, there were the stares and whispers when he had an accident.
Thankfully, three years after starting this process and at the age of five, Ben is now mostly successful at pottying "like a big boy". He has a social story and a social story-ish poster for pottying that were made by our wonderful Parent In Home Training teacher through the school district. He wears undies during the day, even to school (thanks to his vigilant teachers), and a Pull-Up at night, though he rarely wets it. He mostly tells us when he needs to go, and has recently begun to go on his own. He takes off his own pants, etc., following the steps on his poster, even at daycare or Noni and Poppy's house where he doesn't have one. And right before I began typing this post, I heard him singing a song he'd made up about pooping, and there he was on the potty, all by himself, just like he is supposed to do. He does still have accidents, but there are fewer and fewer all the time. After three years of hard work, he is now truly ready.
The main point of this rant is that you just never know why someone else's child is still in a diaper or has an accident or has a pacifier or whatever. No, not every parent does everything they should for their child, but a diaper does not necessarily symbolize laziness, nor does it mean something is "wrong" with someone. You never know what someone's child has gone through medically or developmentally and if you don't know, you shouldn't judge.
Now please excuse me while I return my soap box to the closet.
Ahem. Let me find my soapbox and get into position. Okay, I'm ready.
At our house, potty training has been a three-year-long affair including books, multiple family members, therapists, teachers, stickers, M&Ms, a musical potty chair, a social story, a special poster, and more Pull-Ups and pairs of undies than I can count. We have had successes, messy failures, plateaus, and disasters which have required rewards, consequences, and tons of scrubbing. And while Ben is now five and it is still a work in progress, I don't ever remember lounging around and declaring, "Aw, I don't feel like messin' with this today. Here, just wear a diaper." Not ever.
Ben and I began potty training when he was two years and three months old. I started right after school let out, armed with two children's books called "The Potty Train" and "The Potty Book", an instructional book about training, a musical potty chair, and little blue and white star-printed undies. I thought for sure we would master that in a summer since I planned to work on it every day, and I was looking forward to having it over with.
Ben liked the potty just fine, and he never protested it much. Our days were filled with trying every thirty minutes and celebrating successes with cheers and hugs. Accidents were dealt with by firmly telling him no, and what was to be done instead. We tried and tried, but it just never went anywhere. If he just happened to be on the potty when he needed to go, he would and that was great, but if he wasn't then he had an accident. This was way before his diagnosis, and I had no idea why he couldn't indicate when he needed to go or why he just didn't seem to care. His speech therapist (because he was non-verbal until he was 3&1/2) worked on signs for pottying with us, and I took some comfort in the fact that my Aunt Lenis, mother of three and sitter of many, told me not to stress because little boys just didn't give a rip and that I would probably be packing little pairs of undies in my purse for many years to come.
But mainly, since mothers have such guilty bones, I felt like a failure. I had done it wrong. I had misread Ben and thought he was ready when he wasn't. I wasn't consistent enough, smart enough, etc, etc, etc.
School started again, and Ben began daycare in Pull-Ups instead of undies as I had hoped. We still worked on it and we still had no progress. I initiated the use of a sticker chart and a clapping ritual for his successes, and built up the greatness of using a potty. We spent a lot of time working on it, to the point that I often felt like my life revolved around poop. We tried everything we could think of, and almost everything anyone suggested. Potty training was an arduous battle, punctuated with successes that gave me great hope, followed by massive failures that dashed it.
I don't think I ever could have been called lazy, though I saw the smirks of other parents at Mommy and Me Gymnastics when they saw the waistband of Ben's Pull-Up peek above his shorts, or when I bought those Pull-Ups with Ben in the cart, and the cashier would cluck, "He's such a BIG boy." And, of course, there were the stares and whispers when he had an accident.
Thankfully, three years after starting this process and at the age of five, Ben is now mostly successful at pottying "like a big boy". He has a social story and a social story-ish poster for pottying that were made by our wonderful Parent In Home Training teacher through the school district. He wears undies during the day, even to school (thanks to his vigilant teachers), and a Pull-Up at night, though he rarely wets it. He mostly tells us when he needs to go, and has recently begun to go on his own. He takes off his own pants, etc., following the steps on his poster, even at daycare or Noni and Poppy's house where he doesn't have one. And right before I began typing this post, I heard him singing a song he'd made up about pooping, and there he was on the potty, all by himself, just like he is supposed to do. He does still have accidents, but there are fewer and fewer all the time. After three years of hard work, he is now truly ready.
The main point of this rant is that you just never know why someone else's child is still in a diaper or has an accident or has a pacifier or whatever. No, not every parent does everything they should for their child, but a diaper does not necessarily symbolize laziness, nor does it mean something is "wrong" with someone. You never know what someone's child has gone through medically or developmentally and if you don't know, you shouldn't judge.
Now please excuse me while I return my soap box to the closet.
Friday, April 22, 2011
Lines
Yesterday evening, Ben and I played with some Play-Doh at the dining room table together; then he wanted to color, so I put his Crayons and a coloring book on the floor between the dining room and living room for him. Because I am sick and felt horrible last night, I went to sit in the recliner.
I know. That was a mistake, and it is completely my fault. I know better, and I deserve the scrubbing I had to do and the carpet cleaning I will have to do. Judge all you want, but I felt like complete poo, and that is my excuse.
Ben came up to me and said, "I made lines!" My first thought was, "What do you mean 'lines'?" because Ben doesn't draw in lines. His extremely delayed fine motor skills are one of the more obvious signs of his high-functioning Asperger's. When we had him diganosed through the school district, they estimated his fine motor skills were at about 18 months of age, and he was 4&1/2 at the time. It was terrifying, and one of the reasons I was driven to find a better placement for him. His former class was so over-crowded that his teacher could not work one-on-one with him, and his fine motor delay was grossly neglected. Ben draws in unformed scribbles and specks, or so I thought.
I went to see what he was talking about, and sure enough, about four feet from where I was resting, there were lines. Of crayon. On the carpet.
That poor carpet.
But I barely had time to think about that, because THERE WERE LINES! BEN DREW LINES!
I was so excited I cried.
We had him draw more, and he carefully held the crayon with his pointer finger on top to guide it and drew lines. LINES! STRAIGHT LINES! And just now, as I was typing this, he drew a circle. A CIRCLE! I nearly fell out of the computer chair. And I cried again. Ben thinks I've lost it, but that's okay. I am so proud and relieved I can barely stand it.
It's amazing how much hope a line of crayon on the carpet can give a person, but that comes along with this syndrome. The 'little' things are amazing for children on the spectrum. Because they struggle with those little things. Those things some people get to take for granted, parents of kids on the spectrum get excited about. What some parents would be angry about, I want to frame and hang on the wall and save forever.
Of course we told him not to draw on the carpet and that coloring is for paper, but it is impossible to be angry about your child's success. And I do consider this a beautiful, wonderful, glorious success. It's progress, and progress deserves to be celebrated.
We work with him at home, and his occupational therapist works with him, but I know this success is due to his new teacher in his new placement. He brought home a huge stack of papers on which he had helped cut, paste, draw, and trace his name. There were at least twice as many papers in that stack from about nine weeks in Mrs. S's class than he brought home from his two years in his former placement. They work with him every day. They work and they work, and now Ben can draw LINES!
Beautiful, wonderful, glorious lines!
I know. That was a mistake, and it is completely my fault. I know better, and I deserve the scrubbing I had to do and the carpet cleaning I will have to do. Judge all you want, but I felt like complete poo, and that is my excuse.
Ben came up to me and said, "I made lines!" My first thought was, "What do you mean 'lines'?" because Ben doesn't draw in lines. His extremely delayed fine motor skills are one of the more obvious signs of his high-functioning Asperger's. When we had him diganosed through the school district, they estimated his fine motor skills were at about 18 months of age, and he was 4&1/2 at the time. It was terrifying, and one of the reasons I was driven to find a better placement for him. His former class was so over-crowded that his teacher could not work one-on-one with him, and his fine motor delay was grossly neglected. Ben draws in unformed scribbles and specks, or so I thought.
I went to see what he was talking about, and sure enough, about four feet from where I was resting, there were lines. Of crayon. On the carpet.
That poor carpet.
But I barely had time to think about that, because THERE WERE LINES! BEN DREW LINES!
I was so excited I cried.
We had him draw more, and he carefully held the crayon with his pointer finger on top to guide it and drew lines. LINES! STRAIGHT LINES! And just now, as I was typing this, he drew a circle. A CIRCLE! I nearly fell out of the computer chair. And I cried again. Ben thinks I've lost it, but that's okay. I am so proud and relieved I can barely stand it.
It's amazing how much hope a line of crayon on the carpet can give a person, but that comes along with this syndrome. The 'little' things are amazing for children on the spectrum. Because they struggle with those little things. Those things some people get to take for granted, parents of kids on the spectrum get excited about. What some parents would be angry about, I want to frame and hang on the wall and save forever.
Of course we told him not to draw on the carpet and that coloring is for paper, but it is impossible to be angry about your child's success. And I do consider this a beautiful, wonderful, glorious success. It's progress, and progress deserves to be celebrated.
We work with him at home, and his occupational therapist works with him, but I know this success is due to his new teacher in his new placement. He brought home a huge stack of papers on which he had helped cut, paste, draw, and trace his name. There were at least twice as many papers in that stack from about nine weeks in Mrs. S's class than he brought home from his two years in his former placement. They work with him every day. They work and they work, and now Ben can draw LINES!
Beautiful, wonderful, glorious lines!
Saturday, April 2, 2011
Angry
I am not a political ranter. I do not do this often and hope to not have to again. But this is a bit of a rant. An angry, outraged rant.
I recently learned of a proposed state budget plan to cut Autism services, as well as pre-kindergarten. THEY WANT TO ZERO OUT THE ENTIRE AUTISM SERVICES BUDGET. Meaning no more Autism services in the education system of the state of Texas. I am outraged, horrified, and frightened in response to this choice and the possible harm it will cause to Ben and every other Autistic child in our state. The population of children with Autism is climbing at a terrifying rate, and our state is responding by cutting services for them.
Ben has received speech therapy, occupational therapy, and PPCD (special education pre-school) services, and he is currently thriving in an Autism PPCD class, which he is supposed to attend next year. Those services have yielded a multitude of positive results for my son, and we have been given a great amount of hope for his future. He would be lost in a regular classroom. He would be lost without his teacher, who specializes in teaching children with Autism and has many years of valuable experience.
The state of Texas is attempting to devastate my son and his future. It is also attempting to devastate the futures of all the children with Autism in the state, as well as the strength of the state's future workforce and stability.
But they are prepared to add obesity services. Autism is a disorder which cannot be prevented or cured, and causes multiple learning issues. Obesity is not and does not.
I witness first hand every day the amount of sugar and deep-fried foods that my kids cart around in their backpacks and eat after school or whenever a teacher is not staring directly at them. They turn down fruit at breakfast and vegetables at lunch, and would rather go hungry. One of my students last week informed me that he ate an entire box of zebra cakes for dinner. There is no school program that can help that. All the funding in the world is not going to eliminate that, but it would do an enormous amount of good for special-needs children.
I have worked very hard for the last eight years to provide a first-rate education for my students, only to have my own son's services threatened by a group of politicians who have probably not spent one minute with an Autistic child or in an Autism unit. They are threatening my son's future, as well as that of countless other children in our state.
The slogan "Don't mess with Texas" comes to mind. Texas should not mess with our children. They have a right to an appropriate education.
I have emailed our governor, representative, and state senator. I urge you to do the same, if you are so inclined.
http://governor.state.tx.us/contact/
http://www.house.state.tx.us/
http://www.seliger.senate.state.tx.us/
I recently learned of a proposed state budget plan to cut Autism services, as well as pre-kindergarten. THEY WANT TO ZERO OUT THE ENTIRE AUTISM SERVICES BUDGET. Meaning no more Autism services in the education system of the state of Texas. I am outraged, horrified, and frightened in response to this choice and the possible harm it will cause to Ben and every other Autistic child in our state. The population of children with Autism is climbing at a terrifying rate, and our state is responding by cutting services for them.
Ben has received speech therapy, occupational therapy, and PPCD (special education pre-school) services, and he is currently thriving in an Autism PPCD class, which he is supposed to attend next year. Those services have yielded a multitude of positive results for my son, and we have been given a great amount of hope for his future. He would be lost in a regular classroom. He would be lost without his teacher, who specializes in teaching children with Autism and has many years of valuable experience.
The state of Texas is attempting to devastate my son and his future. It is also attempting to devastate the futures of all the children with Autism in the state, as well as the strength of the state's future workforce and stability.
But they are prepared to add obesity services. Autism is a disorder which cannot be prevented or cured, and causes multiple learning issues. Obesity is not and does not.
I witness first hand every day the amount of sugar and deep-fried foods that my kids cart around in their backpacks and eat after school or whenever a teacher is not staring directly at them. They turn down fruit at breakfast and vegetables at lunch, and would rather go hungry. One of my students last week informed me that he ate an entire box of zebra cakes for dinner. There is no school program that can help that. All the funding in the world is not going to eliminate that, but it would do an enormous amount of good for special-needs children.
I have worked very hard for the last eight years to provide a first-rate education for my students, only to have my own son's services threatened by a group of politicians who have probably not spent one minute with an Autistic child or in an Autism unit. They are threatening my son's future, as well as that of countless other children in our state.
The slogan "Don't mess with Texas" comes to mind. Texas should not mess with our children. They have a right to an appropriate education.
I have emailed our governor, representative, and state senator. I urge you to do the same, if you are so inclined.
http://governor.state.tx.us/contact/
http://www.house.state.tx.us/
http://www.seliger.senate.state.tx.us/
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