A few weeks ago, a coworker sent us all the link to a short film, The Butterfly Circus. It's one of the most inspirational things I have ever seen. She showed it to her students on one of our "college days", I suppose to inspire them to do the hard work that earning a college education requires. And I can totally see that. One of the most important beliefs to have as a teacher is that your students can overcome any challenge and "do anything". I believe it. I have seen it. And I know I will see it again.
Of course, my precious boy is always on my mind and in the center of my heart, and he was the first person I thought of when I watched it. I have always been focused on the idea that Autism should not and will not stand in Ben's way. I am determined not to let it limit him and his potential to do anything he wants. I know that he can and I believe that he will.
The film is 20 minutes long, but it is completely worth your 20 minutes. I promise.
The Butterfly Circus
Sunday, December 11, 2011
Sunday, December 4, 2011
Unsolicited Advice
Something happened a few weeks ago that I fully intended to post about but didn't have the time to do so, which is the story of my life lately. It has sat there in my brain, kind of hanging out for awhile, and every time I focus on it and really think about it for a moment, I get worked up about it again so here I am. That's partly because an event like this is very much a part of the experience of raising a child on the spectrum, a child with any kind of special needs, and quite possibly any child at all. It's also partly because it's an example of how raising Ben has changed me as a person in many fundamental ways.
A few Saturdays ago, Ben and I went to the local super center to do our grocery shopping. Such an errand creates a medium-to-high level of anxiety for me because I don't know how Ben is going to handle the noise, crowd, and being stuck in a cart for up to an hour. I place it on the picture schedule so he will know ahead of time, discuss expectations and what "big boy words" to use if the store is too noisy or if he needs something, and I pack fidget toys, a juice box, snack, and mints in my purse to make sure he has the distractions and comforts he might need. It's never just a matter of getting in the car and going, as it always requires preparation. Sometimes he handles it perfectly well, sometimes he handles it mostly well with a few outbursts, and occasionally he screams the whole time and punctuates that screaming with throwing things. There is no way to predict the latter and even though I always try to head it off, sometimes there is no way to do that either.
On this particular Saturday, he did mostly well until we were in a particularly crowded aisle of chatty people, and I swear someone cranked the Christmas music up a few notches. Ben lost it. "It's too loud! he screamed, while hitting the side of his head with his hand and simultaneously kicking off his shoes. He swiped at me, threw a roll of paper towels out of my cart, and howled. I covered his ears with my hands and began telling him that it would be okay and we could put the hood up on his jacket to help, when some lady I have never seen before in my life wearing a horrendous cat sweatshirt stepped up to me with a condescending smile on her face, and said, "Your son is throwing a tantrum." I just stood there while my jaw dropped. My child was throwing a tantrum? No kidding, lady! She continued, "This is what happens when we try to be our child's friend instead of his parent. I recommend strict consequences for behavior like this." And then she took a step back and looked at me expectantly.
I don't know what the hell she was expecting, but I'm sure it wasn't what was going through my mind because first of all, did she really think I was not aware that my child was throwing a fit? Did she really think I needed that pointed out to me while his shoes were in the floor and he was screaming? And second of all, who the hell asked her? It's not like he is the first child to ever throw a fit in Wal-Mart, and the fact that he did indeed throw a tantrum does not mean he does not have consequences for his behavior. Having sensory integration deficits is not a chosen behavior, and that's what I suppose I should have told her because she was clearly clueless that he has Autism and probably has no idea what that is, but my brain was so full of profanity in that moment that my filter (which isn't a very good one) was working double time to control my mouth, and instead all I could do was glare at her while retrieving Ben's shoes. Thankfully, some other lady quietly put my paper towels back in my cart (if I had picked them up myself, I probably would have thrown them at the cat shirt lady), so I pulled Ben's hood up over his head and pushed my cart out of that aisle as quickly as possible.
This is not the first time such a thing has happened. Ben and I have been stared at and whispered about (and even laughed at) at restaurants, parks, Mommy and Me gymnastics, etc, but never had I encountered someone who would dare tell me I was doing it wrong and that they knew better about my own child than I did. Part of me regrets not telling her off and part of me wishes I had been able to stop and educate her, not only about Autism and my child but also about that judgemental cloud she lives under that caused her to say what she said and make a rough moment even worse, for all the good it might have done. When I say that Ben changed me, I mostly mean he changed this. Not that I was ever exactly the cat shirt lady, because I never would have told someone how to parent their child, but I would have thought it. I would have felt critical and I would have thought, "Parents don't discipline their children."
I am no where near perfect and never will be, but raising Ben has taught me that there is always another side to things; that living under a critical cloud blurs my own life. I have had to learn to look at my child in a more positive light and to believe that he can overcome his obstacles to do whatever he wants and be anything he is willing to work toward. I am able to see my students in a different light as well, with that same hope for possibility. There is more sunshine in my life now, and I am a far more positive person than I was. As frustrated as I get with Autism sometimes, I needed Ben. I needed the change.
In response to the rude cat shirt lady, a friend suggested I get Autism Awareness cards to hand out in similar situations. It's a good plan and a good reaction, much more acceptable than throwing paper towels or unleashing unfiltered profanity. I browsed them online and didn't find any I completely liked, so I borrowed bits of a few and added my own line. Below is what I came up with. Feel free to use the wording if you have a need:
A few Saturdays ago, Ben and I went to the local super center to do our grocery shopping. Such an errand creates a medium-to-high level of anxiety for me because I don't know how Ben is going to handle the noise, crowd, and being stuck in a cart for up to an hour. I place it on the picture schedule so he will know ahead of time, discuss expectations and what "big boy words" to use if the store is too noisy or if he needs something, and I pack fidget toys, a juice box, snack, and mints in my purse to make sure he has the distractions and comforts he might need. It's never just a matter of getting in the car and going, as it always requires preparation. Sometimes he handles it perfectly well, sometimes he handles it mostly well with a few outbursts, and occasionally he screams the whole time and punctuates that screaming with throwing things. There is no way to predict the latter and even though I always try to head it off, sometimes there is no way to do that either.
On this particular Saturday, he did mostly well until we were in a particularly crowded aisle of chatty people, and I swear someone cranked the Christmas music up a few notches. Ben lost it. "It's too loud! he screamed, while hitting the side of his head with his hand and simultaneously kicking off his shoes. He swiped at me, threw a roll of paper towels out of my cart, and howled. I covered his ears with my hands and began telling him that it would be okay and we could put the hood up on his jacket to help, when some lady I have never seen before in my life wearing a horrendous cat sweatshirt stepped up to me with a condescending smile on her face, and said, "Your son is throwing a tantrum." I just stood there while my jaw dropped. My child was throwing a tantrum? No kidding, lady! She continued, "This is what happens when we try to be our child's friend instead of his parent. I recommend strict consequences for behavior like this." And then she took a step back and looked at me expectantly.
I don't know what the hell she was expecting, but I'm sure it wasn't what was going through my mind because first of all, did she really think I was not aware that my child was throwing a fit? Did she really think I needed that pointed out to me while his shoes were in the floor and he was screaming? And second of all, who the hell asked her? It's not like he is the first child to ever throw a fit in Wal-Mart, and the fact that he did indeed throw a tantrum does not mean he does not have consequences for his behavior. Having sensory integration deficits is not a chosen behavior, and that's what I suppose I should have told her because she was clearly clueless that he has Autism and probably has no idea what that is, but my brain was so full of profanity in that moment that my filter (which isn't a very good one) was working double time to control my mouth, and instead all I could do was glare at her while retrieving Ben's shoes. Thankfully, some other lady quietly put my paper towels back in my cart (if I had picked them up myself, I probably would have thrown them at the cat shirt lady), so I pulled Ben's hood up over his head and pushed my cart out of that aisle as quickly as possible.
This is not the first time such a thing has happened. Ben and I have been stared at and whispered about (and even laughed at) at restaurants, parks, Mommy and Me gymnastics, etc, but never had I encountered someone who would dare tell me I was doing it wrong and that they knew better about my own child than I did. Part of me regrets not telling her off and part of me wishes I had been able to stop and educate her, not only about Autism and my child but also about that judgemental cloud she lives under that caused her to say what she said and make a rough moment even worse, for all the good it might have done. When I say that Ben changed me, I mostly mean he changed this. Not that I was ever exactly the cat shirt lady, because I never would have told someone how to parent their child, but I would have thought it. I would have felt critical and I would have thought, "Parents don't discipline their children."
I am no where near perfect and never will be, but raising Ben has taught me that there is always another side to things; that living under a critical cloud blurs my own life. I have had to learn to look at my child in a more positive light and to believe that he can overcome his obstacles to do whatever he wants and be anything he is willing to work toward. I am able to see my students in a different light as well, with that same hope for possibility. There is more sunshine in my life now, and I am a far more positive person than I was. As frustrated as I get with Autism sometimes, I needed Ben. I needed the change.
In response to the rude cat shirt lady, a friend suggested I get Autism Awareness cards to hand out in similar situations. It's a good plan and a good reaction, much more acceptable than throwing paper towels or unleashing unfiltered profanity. I browsed them online and didn't find any I completely liked, so I borrowed bits of a few and added my own line. Below is what I came up with. Feel free to use the wording if you have a need:
My son has Autism
When a person with Autism feels overwhelmed
by his sensory integration deficits, he may behave
in an unpredictable manner. His current
behavior is a reflection neither of his intelligence
and worth, nor of my parenting. Your patience
would be appreciated. For more information,
please go to www.autismspeaks.org
Sunday, November 6, 2011
Wherein I Cram a Week Into One Post
Whew! This has been a big, busy week and I have been sick for most of it with the worst UTI ever. I am thankful to be feeling better and for all the help I got from so many people, and I am thoroughly dreading tomorrow at work. I already have a list of things to do tomorrow as long as my leg and I haven't even seen my desk yet. Boooo.
In Ben news, he had an awesome Halloween and was healthy enough to celebrate it. Last Sunday, we carved pumpkins and he very happily scooped the guts out of the pumpkins. This is fantastic sensory news, as it didn't seem to bother him at all. He also seemed very happy that Mommy and Daddy were both involved, and it was a fun activity. He chose a "ghosty face" for the white pumpkin and a "happy jack'o lantern face" for our big orange one.
On the day of Halloween, he happily donned his fireman outfit and was very excited to trick-or-treat. We went to some family members' homes first and then we did two blocks at home. There weren't very many porch lights on, but the people who did participate were sweet and generous. Ben had a blast, and he nicely said "Trick or treat!" and "thank you" at each house, though sometimes in the wrong order. Oh well. He was the cutest fireman ever and got lots of smiles and compliments. He had a bit of anxiety in places when there wasn't a porch light on for a few houses or when he wanted to carry a big sharp stick and we wouldn't let him for safety reasons. He also had a bit of a meltdown when we decided to go back to the house because it was getting dark, but overall he did very well.
Then Tuesday rolled around and we headed to a surgical hospital at 7 a.m. so his E.N.T. could remove the blue Play-Doh from his left ear. I know. Yes, he had Play-Doh in his ear. I think it just must have been on his finger and he scratched his ear or something, but it was close to the eardrum and couldn't be tweezed out so it had to be removed while he was under. Too bad he couldn't just sneeze it out like he did the LEGO he stuck in his nose, because while this procedure was short and relatively painless, it was expensive. The surgical hospital was great with Ben, though, and he only had a few issues. He was a doll until it was time to put on the little gown, and then the screaming began. They solved that by letting him wrap up in a blanket with his undies and socks on instead, and that helped until a female nurse asked him to get in the bed so she could wheel him back for the procedure. He began screaming and crying that he wanted "a man to do it" and they quickly found a very nice male nurse who carried him back without incident. I don't know why he does that sometimes; maybe because he gets it set in his mind that it will be a man, and he doesn't change his idea about things very easily. At any rate, the procedure went well, the Play-Doh is out, and other than being a bit drowsy and dizzy from the gas, he was fine.
Fast forward to yesterday, and I discovered that he lost his first tooth at some point this week. He was digging in the back of his mouth and I felt around to see if he was getting a molar or something, when I saw that a lower front baby tooth was gone. Gone! There is just a little dark spot on the gum where it was and a permanent tooth is pushing up behind it. I was heart broken. I had a special book to read with him for this occasion (Bear's Loose Tooth by Karma Wilson), a special Tooth Fairy box Noni got him, and had big plans to celebrate it and be the Tooth Fairy. I also felt like I had messed up. How did my baby, my number one most important person, lose his first tooth and I had no idea? I know I was sick last week, but still, I am a bit upset about it.
Fortunately, he was not traumatized by it as I had feared he would be and I don't think he even noticed. I showed him his new tooth in the mirror and showed him that the one beside it is loose now too, but he really couldn't have cared less until we read the book and dug out the box. Now he is super excited and wants the other one to fall out right now! Hopefully, we'll catch this one. It was a busy week, and I am proud of what a big boy he was at many points of it. He was also very sweet to me while I was sick, and I just couldn't ask for a better boy. I really wouldn't change a thing.
In Ben news, he had an awesome Halloween and was healthy enough to celebrate it. Last Sunday, we carved pumpkins and he very happily scooped the guts out of the pumpkins. This is fantastic sensory news, as it didn't seem to bother him at all. He also seemed very happy that Mommy and Daddy were both involved, and it was a fun activity. He chose a "ghosty face" for the white pumpkin and a "happy jack'o lantern face" for our big orange one.
On the day of Halloween, he happily donned his fireman outfit and was very excited to trick-or-treat. We went to some family members' homes first and then we did two blocks at home. There weren't very many porch lights on, but the people who did participate were sweet and generous. Ben had a blast, and he nicely said "Trick or treat!" and "thank you" at each house, though sometimes in the wrong order. Oh well. He was the cutest fireman ever and got lots of smiles and compliments. He had a bit of anxiety in places when there wasn't a porch light on for a few houses or when he wanted to carry a big sharp stick and we wouldn't let him for safety reasons. He also had a bit of a meltdown when we decided to go back to the house because it was getting dark, but overall he did very well.
Then Tuesday rolled around and we headed to a surgical hospital at 7 a.m. so his E.N.T. could remove the blue Play-Doh from his left ear. I know. Yes, he had Play-Doh in his ear. I think it just must have been on his finger and he scratched his ear or something, but it was close to the eardrum and couldn't be tweezed out so it had to be removed while he was under. Too bad he couldn't just sneeze it out like he did the LEGO he stuck in his nose, because while this procedure was short and relatively painless, it was expensive. The surgical hospital was great with Ben, though, and he only had a few issues. He was a doll until it was time to put on the little gown, and then the screaming began. They solved that by letting him wrap up in a blanket with his undies and socks on instead, and that helped until a female nurse asked him to get in the bed so she could wheel him back for the procedure. He began screaming and crying that he wanted "a man to do it" and they quickly found a very nice male nurse who carried him back without incident. I don't know why he does that sometimes; maybe because he gets it set in his mind that it will be a man, and he doesn't change his idea about things very easily. At any rate, the procedure went well, the Play-Doh is out, and other than being a bit drowsy and dizzy from the gas, he was fine.
Fast forward to yesterday, and I discovered that he lost his first tooth at some point this week. He was digging in the back of his mouth and I felt around to see if he was getting a molar or something, when I saw that a lower front baby tooth was gone. Gone! There is just a little dark spot on the gum where it was and a permanent tooth is pushing up behind it. I was heart broken. I had a special book to read with him for this occasion (Bear's Loose Tooth by Karma Wilson), a special Tooth Fairy box Noni got him, and had big plans to celebrate it and be the Tooth Fairy. I also felt like I had messed up. How did my baby, my number one most important person, lose his first tooth and I had no idea? I know I was sick last week, but still, I am a bit upset about it.
Fortunately, he was not traumatized by it as I had feared he would be and I don't think he even noticed. I showed him his new tooth in the mirror and showed him that the one beside it is loose now too, but he really couldn't have cared less until we read the book and dug out the box. Now he is super excited and wants the other one to fall out right now! Hopefully, we'll catch this one. It was a busy week, and I am proud of what a big boy he was at many points of it. He was also very sweet to me while I was sick, and I just couldn't ask for a better boy. I really wouldn't change a thing.
Sunday, October 30, 2011
Sinking
This post isn't about Ben. It's about me.
Something is happening to me that I don't understand. Emotionally, I am sinking further and further into some kind of unfamiliar dark and gloomy pit that I can't seem to claw my way out of. To say I feel sad is an understatement of huge proportions. I cry. A lot. I don't want to get out of bed in the morning. I get angry quickly and feel horrible about my anger afterward, even if I had the right to feel angry. I snap at people who don't deserve it and get way more upset about little things than I should. I get a tight feeling in my chest and I feel absolutely helpless and hopeless sometimes. And right now, just trying to write about it and explain it, I am crying so much I can barely see the screen.
And I have no idea what to do about it.
A very supportive little FB group I'm in has mentioned that every mom of a kid with Autism suffers from some kind of depression. That statement completely caught me off guard and I found myself holding my breath as I re-read it.
See, I don't get "depression". I am Danica, and I am too strong for that kind of "crap". I deal with things and buckle down and take care of business and move on and solve the problems and figure it out, even if that means cutting people out and off or accepting that sometimes things and certain people just suck and I have to move past them.
At least, that's what I thought I did.
Right now I'm too weepy to do any kind of buckling down or moving past.
This is the point where I need to clarify that I love my son more than anything and feel blessed to have him in my life. I love his smiles and laughter, his funny ways, his sense of humor, his imagination, his loving little spirit, his determination, and the fact that I am the one he still needs and snuggles with when the going gets tough for him. He is my most important purpose and priority and he is totally worth the effort, stress, and anxiety that comes along with an Autism diagnosis. I'm worried about not being a good enough parent, though. But that's always a worry.
I also feel I need to reassure everyone that you will not see me in the newspaper headlines. I will not do anything crazy or horrible, and no one will call you to interview you about whether or not you knew I was off my rocker. I promise. I'm not so bad off that I can't see this happening and that I don't know something is up.
I have been steeling myself against the possibility that it may be more than feeling a little blue and that I may need to mention this to my doctor, should I ever get a chance to do that. I will surely have another sinus infection soon and that may give me the opportunity. It doesn't sit well with me, though. Not that I judge others for needing meds or help, but I simply thought I didn't have "that problem." I'm not supposed to have it. I don't have time to have it, and I certainly don't want to have it. I am learning, though, that I am not always so strong as I'd like to be.
Something is happening to me that I don't understand. Emotionally, I am sinking further and further into some kind of unfamiliar dark and gloomy pit that I can't seem to claw my way out of. To say I feel sad is an understatement of huge proportions. I cry. A lot. I don't want to get out of bed in the morning. I get angry quickly and feel horrible about my anger afterward, even if I had the right to feel angry. I snap at people who don't deserve it and get way more upset about little things than I should. I get a tight feeling in my chest and I feel absolutely helpless and hopeless sometimes. And right now, just trying to write about it and explain it, I am crying so much I can barely see the screen.
And I have no idea what to do about it.
A very supportive little FB group I'm in has mentioned that every mom of a kid with Autism suffers from some kind of depression. That statement completely caught me off guard and I found myself holding my breath as I re-read it.
See, I don't get "depression". I am Danica, and I am too strong for that kind of "crap". I deal with things and buckle down and take care of business and move on and solve the problems and figure it out, even if that means cutting people out and off or accepting that sometimes things and certain people just suck and I have to move past them.
At least, that's what I thought I did.
Right now I'm too weepy to do any kind of buckling down or moving past.
This is the point where I need to clarify that I love my son more than anything and feel blessed to have him in my life. I love his smiles and laughter, his funny ways, his sense of humor, his imagination, his loving little spirit, his determination, and the fact that I am the one he still needs and snuggles with when the going gets tough for him. He is my most important purpose and priority and he is totally worth the effort, stress, and anxiety that comes along with an Autism diagnosis. I'm worried about not being a good enough parent, though. But that's always a worry.
I also feel I need to reassure everyone that you will not see me in the newspaper headlines. I will not do anything crazy or horrible, and no one will call you to interview you about whether or not you knew I was off my rocker. I promise. I'm not so bad off that I can't see this happening and that I don't know something is up.
I have been steeling myself against the possibility that it may be more than feeling a little blue and that I may need to mention this to my doctor, should I ever get a chance to do that. I will surely have another sinus infection soon and that may give me the opportunity. It doesn't sit well with me, though. Not that I judge others for needing meds or help, but I simply thought I didn't have "that problem." I'm not supposed to have it. I don't have time to have it, and I certainly don't want to have it. I am learning, though, that I am not always so strong as I'd like to be.
Tuesday, October 11, 2011
Worth a Thousand Words
Yesterday, Ben's daycare sent home a photo that made me stop in my tracks, and if I need to express any one particular thing about Autism, this picture summarizes it perfectly. It shows so much more about how Autism affects my child than I could ever effectively write or say.
Unfortunately, I can't share it with you. There are other children in the picture whose parents I don't know, and I do not feel comfortable showing their photos here, because I would be a bit ticked if perfect strangers put my kid on their blog. You know, do unto others and stuff. And I can't crop them out because they are crucial elements in the picture. Without them, the difference isn't there. So, we are all just going to have to make do with whatever words I can scrounge up to describe a picture that most accurately illustrates Autism that I can't show you but need to share with you. Irony, anyone? Or is it not ironic, but just confusing?
At any rate, imagine in your mind fourteen five-year-olds dressed in florescent daycare shirts all posed around an inflatable pumpkin at the pumpkin patch. They have been told that this picture is a souvenir of their field trip for their parents, and everybody stop picking your nose and say cheese. Thirteen of those children are smiling brightly, showing all their teeth. One of those children has that "Who farted?" expression.
Then there is Ben. Ben is in the middle of everything, wearing the same shirt, sitting right in front of the inflatable pumpkin, with kids on either side of him and slightly in front. He is not looking at the camera. He is sitting sideways. He is not looking at anyone but is instead contemplating something he is holding in his hand, perhaps a leaf or piece of hay.
He is with the others but separate from them, all at the same time. He is in his own world right in the middle of theirs.
This is what Autism does. This is what Autism looks like, at least from my experience.
Actually, there was a time a few years ago when he wouldn't have even been in the picture. He wouldn't have been able to tolerate sitting so close to other kids, though he has always been affectionate with us and has sat with us. This shows improvement, and I am thankful for it, but the difference and the struggle are so evident in this picture that I tear up when I see it.
What I hope you will take away from this little experience of mine is that Ben doesn't want to be alone, but because of this syndrome, he just is. He is separate, apart, and different, but if someone takes the time to make the effort required to enter his world, he is well worth it. I promise.
Please reach out to children with Autism and please teach your children to reach out to children with Autism or any kind of difference, instead of just ridiculing or ignoring them. They are worth it. I promise.
Unfortunately, I can't share it with you. There are other children in the picture whose parents I don't know, and I do not feel comfortable showing their photos here, because I would be a bit ticked if perfect strangers put my kid on their blog. You know, do unto others and stuff. And I can't crop them out because they are crucial elements in the picture. Without them, the difference isn't there. So, we are all just going to have to make do with whatever words I can scrounge up to describe a picture that most accurately illustrates Autism that I can't show you but need to share with you. Irony, anyone? Or is it not ironic, but just confusing?
At any rate, imagine in your mind fourteen five-year-olds dressed in florescent daycare shirts all posed around an inflatable pumpkin at the pumpkin patch. They have been told that this picture is a souvenir of their field trip for their parents, and everybody stop picking your nose and say cheese. Thirteen of those children are smiling brightly, showing all their teeth. One of those children has that "Who farted?" expression.
Then there is Ben. Ben is in the middle of everything, wearing the same shirt, sitting right in front of the inflatable pumpkin, with kids on either side of him and slightly in front. He is not looking at the camera. He is sitting sideways. He is not looking at anyone but is instead contemplating something he is holding in his hand, perhaps a leaf or piece of hay.
He is with the others but separate from them, all at the same time. He is in his own world right in the middle of theirs.
This is what Autism does. This is what Autism looks like, at least from my experience.
Actually, there was a time a few years ago when he wouldn't have even been in the picture. He wouldn't have been able to tolerate sitting so close to other kids, though he has always been affectionate with us and has sat with us. This shows improvement, and I am thankful for it, but the difference and the struggle are so evident in this picture that I tear up when I see it.
What I hope you will take away from this little experience of mine is that Ben doesn't want to be alone, but because of this syndrome, he just is. He is separate, apart, and different, but if someone takes the time to make the effort required to enter his world, he is well worth it. I promise.
Please reach out to children with Autism and please teach your children to reach out to children with Autism or any kind of difference, instead of just ridiculing or ignoring them. They are worth it. I promise.
Sunday, September 11, 2011
Back to the Grind
Summer time is pretty sweet and laid-back around here. Ben and I fall into a routine of sleeping later, playing, the park, the DH Discovery Center, the zoo, feeding ducks, and splashing in the kiddie pool. We did do extra therapy this summer (two sessions of OT, one of ST, and one of PT each week), and we do keep a routine so that he won't get upset and feel distressed, but it is nothing like his school routine.
Ben's school routine this year consists of Daddy driving him to school, riding the bus at 1:30 to his daycare, and then one of us picking him up from daycare. Wednesdays include OT. He also attends just daycare for a week before school starts while I am at in-service. Getting back into the routine has always been difficult for him, even when he didn't have as many transitions as he does now, and the first few weeks had always required us to pry him off of the floor, kicking and screaming, and drag him out of the door each morning, only to have to leave him at school or daycare while he sobbed, screamed, and took off his shoes. After a few weeks, he calmed down at home but then would still have the fit at school. It was painful at best, and we all dreaded Ben's morning transition.
But this year has been different! Thank goodness! He handled the first week of daycare like a champ, no fits and no problems! He was clingy with his dad the first day of school, but handled it like a champ as well. We are now officially three weeks into school, and mornings have been very smooth, except for an occasional clothes issue. I never imagined it could go this well.
Was it magic? Did I find a magical fairy wand to wave at Ben to make mornings better for him? Unfortunately, no. If I had a magical wand, everyone would know because of all of the frogs suddenly hopping around. We did, however, find some tools and tricks of the trade that have made school and morning transitions much easier for Ben.
After Ben was diagnosed through the school district (after our original private diagnosis), they enrolled us in their Parent In-Home Training program, and we were blessed with visits from a wonderful PPCD teacher, Ms. D, who introduced us to social stories. Social stories are little home-made books that show Ben doing something, one step at a time. Each page will have a picture taken of Ben doing one step of a process that is described in a single sentence. They can be spiral bound or put together with rings from an office supply store. We have separate ones for pottying, hand-washing, getting dressed, picking up toys, going to school, going to daycare, eating in the cafeteria, etc.
Want to know a secret? At first, I thought this sweet lady was crazy. I could not see how this was going to help my son. Despite the fact than Ben loves books, I just could not buy into the idea that he needed a book to show him how to potty or go to the cafeteria. We had books about pottying, after all. "The Potty Train", "The Potty Book for Boys", "Potty Time", etc, and they had not done a bit of good, so I certainly did not believe these little construction paper photo books were going to make a bit of difference for Ben.
Until they did. Because they really, really did. Being able to see himself doing the scary and/or confusing process step by step has made a world of difference for him. His self-help is gradually improving, and it has helped him with going back to school and daycare and falling back into that routine.
Another tool we are using (that I was also skeptical about) are picture schedules. Ben's teacher uses them at school to help the students negotiate their routines and to teach them how to transition from one center and activity to another. Our picture schedule at home consists of a piece of laminated card stock with self-stick Velcro on it. Picture symbols representing pieces of Ben's day have pieces of opposite Velcro so they can be easily put on and removed from the schedule. We have generic symbols for pottying, dressing, eating, a school bus, picking up toys, etc, but we also have little photographs of me, his dad, my parents, school, daycare, our vehicles, and his therapy clinic. Each evening, Ben and I sit down together and arrange his picture schedule for the following day, and then we go over it together the next morning. He also likes to look at it with his dad when he comes to take him to school. It's not a magic wand, but it does help him understand and deal with the parts of his day better than I ever imagined it would.
We also visited his daycare a week before he returned to meet his new teacher and see his new classroom, and also to take pictures for a social story. And we attended the meet and greet at his school to visit his teacher (he will have wonderful Mrs. S. again just like last year when he began this school in January). Mrs. S had readied his cubby and desk so that he could see them. Last May, she had also sent home a social story about his new, longer school day and the additional situations of lunch in the cafeteria and the routine that will follow, and she really deserves a great deal of credit for how well Ben handles school now. I believe her classroom is a much safer and more comfortable environment for him than his old classroom at his former school, and I do believe that is part of the reason he does not fight it or dread it so much. We are really fortunate to have her as Ben's PPCD teacher.
I also involved Ben in choosing his backpack, lunchbox, and school supplies, and we had daily conversations about returning to school, as well as reading children's books about going to school (Berenstain Bears, Curious George, "The Kissing Hand", and a new Skippyjon Jones story "Class Action") and, of course, the helpful social stories.
I am very proud of Ben and the growth he is showing this year, and I am sooooooo happy that he is no longer so upset by school that he needs to fight against going. I am learning to try tools before being skeptical of them, because you just never know what will help your child until you try it. But if you see a magic wand lying around somewhere, let me know. Ya know, just in case someone needs to be turned into a frog.
Ben's school routine this year consists of Daddy driving him to school, riding the bus at 1:30 to his daycare, and then one of us picking him up from daycare. Wednesdays include OT. He also attends just daycare for a week before school starts while I am at in-service. Getting back into the routine has always been difficult for him, even when he didn't have as many transitions as he does now, and the first few weeks had always required us to pry him off of the floor, kicking and screaming, and drag him out of the door each morning, only to have to leave him at school or daycare while he sobbed, screamed, and took off his shoes. After a few weeks, he calmed down at home but then would still have the fit at school. It was painful at best, and we all dreaded Ben's morning transition.
But this year has been different! Thank goodness! He handled the first week of daycare like a champ, no fits and no problems! He was clingy with his dad the first day of school, but handled it like a champ as well. We are now officially three weeks into school, and mornings have been very smooth, except for an occasional clothes issue. I never imagined it could go this well.
Was it magic? Did I find a magical fairy wand to wave at Ben to make mornings better for him? Unfortunately, no. If I had a magical wand, everyone would know because of all of the frogs suddenly hopping around. We did, however, find some tools and tricks of the trade that have made school and morning transitions much easier for Ben.
After Ben was diagnosed through the school district (after our original private diagnosis), they enrolled us in their Parent In-Home Training program, and we were blessed with visits from a wonderful PPCD teacher, Ms. D, who introduced us to social stories. Social stories are little home-made books that show Ben doing something, one step at a time. Each page will have a picture taken of Ben doing one step of a process that is described in a single sentence. They can be spiral bound or put together with rings from an office supply store. We have separate ones for pottying, hand-washing, getting dressed, picking up toys, going to school, going to daycare, eating in the cafeteria, etc.
Want to know a secret? At first, I thought this sweet lady was crazy. I could not see how this was going to help my son. Despite the fact than Ben loves books, I just could not buy into the idea that he needed a book to show him how to potty or go to the cafeteria. We had books about pottying, after all. "The Potty Train", "The Potty Book for Boys", "Potty Time", etc, and they had not done a bit of good, so I certainly did not believe these little construction paper photo books were going to make a bit of difference for Ben.
Until they did. Because they really, really did. Being able to see himself doing the scary and/or confusing process step by step has made a world of difference for him. His self-help is gradually improving, and it has helped him with going back to school and daycare and falling back into that routine.
Another tool we are using (that I was also skeptical about) are picture schedules. Ben's teacher uses them at school to help the students negotiate their routines and to teach them how to transition from one center and activity to another. Our picture schedule at home consists of a piece of laminated card stock with self-stick Velcro on it. Picture symbols representing pieces of Ben's day have pieces of opposite Velcro so they can be easily put on and removed from the schedule. We have generic symbols for pottying, dressing, eating, a school bus, picking up toys, etc, but we also have little photographs of me, his dad, my parents, school, daycare, our vehicles, and his therapy clinic. Each evening, Ben and I sit down together and arrange his picture schedule for the following day, and then we go over it together the next morning. He also likes to look at it with his dad when he comes to take him to school. It's not a magic wand, but it does help him understand and deal with the parts of his day better than I ever imagined it would.
We also visited his daycare a week before he returned to meet his new teacher and see his new classroom, and also to take pictures for a social story. And we attended the meet and greet at his school to visit his teacher (he will have wonderful Mrs. S. again just like last year when he began this school in January). Mrs. S had readied his cubby and desk so that he could see them. Last May, she had also sent home a social story about his new, longer school day and the additional situations of lunch in the cafeteria and the routine that will follow, and she really deserves a great deal of credit for how well Ben handles school now. I believe her classroom is a much safer and more comfortable environment for him than his old classroom at his former school, and I do believe that is part of the reason he does not fight it or dread it so much. We are really fortunate to have her as Ben's PPCD teacher.
I also involved Ben in choosing his backpack, lunchbox, and school supplies, and we had daily conversations about returning to school, as well as reading children's books about going to school (Berenstain Bears, Curious George, "The Kissing Hand", and a new Skippyjon Jones story "Class Action") and, of course, the helpful social stories.
I am very proud of Ben and the growth he is showing this year, and I am sooooooo happy that he is no longer so upset by school that he needs to fight against going. I am learning to try tools before being skeptical of them, because you just never know what will help your child until you try it. But if you see a magic wand lying around somewhere, let me know. Ya know, just in case someone needs to be turned into a frog.
Sunday, August 14, 2011
A Questioning Boy
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.
"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.
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