Bambam's school does a back to school sock hop every September. The gym is decorated, the lights dimmed, the music loud, spot lights, disco balls, lots of kids, parents, laughter, fun. Its a familiar scene played in many schools this time of year. Its a time to kick off the new school year, reconnect with families you haven't seen over the summer, meet new families that are joining the school, and just have a good time. Last year we made it as far as the gym doors. That was it. We never made it inside. After 10 minutes, we went back home.
But this year? This year was a whole different story. This year we not only made it into the gym (after a 5 minute wait outside the doors to take everything in), but we stayed for 45 minutes! And there was dancing and eating snacks and saying hi to classmates! Granted, most of the dancing was by himself just at the edge of the dance floor and there were three 5 minute breaks outside and sitting in a (quieter) corner to have snacks. But 45 minutes! And once, he even let one of his classmates take him by the hand to the middle of the dance floor. Where he stood and watched her dance for about 30 seconds before retreating to the edge. But 45 minutes, without a meltdown. And when he said "I go home now", we calmly left. A HUGE success.
In this journey with autism it is so easy to get caught up in the day to day struggles. Some days it feels like we are not making any progress. Many of the same issues rear their annoying heads day after day after day. But when I step back and compare this year to last year, I can see how far he's really come. How much progress he has made. And my heart sings.
My Side of Typical
Saturday, September 29, 2012
Wednesday, September 26, 2012
The Fortunate One
We are so very fortunate. We are one of the lucky ones. Yes, we live with autism day in and day out. And yes, it can be stressful and overwhelming at times. But we have amazing support. From family, from friends, from teachers and aides and neighbors. The list is long. And every day I'm thankful for each and every one of these people. The teachers who are endlessly patient, the aides who are loving and caring, the doctors who don't dismiss us and listen when we say there is an issue, the friends who include us in their gatherings, their kids who take Bambam as he is and do their best to engage him in their play, grandparents who will babysit anytime...
But, today, at this moment what I'm most thankful for is my amazing sister. I could never do this without her. She is my sounding board, my support, my cheerleader, my adviser. When I call her upset that Bambam can't do the activity the other kids at school were doing, she listens. And then she reminds me what he can do. And that he will do the other things too, in his own time. When I'm on my last nerve, she invites me to her house for an afternoon of "sister time". And if the stars line up and the gods are smiling, maybe, just maybe an overnight sister trip. She sends me mismatched socks in the mail with a picture of the other mismatched socks on her own feet. The note says: When having a very bad day, put on the sister socks and know that I'm standing with you in solidarity. What 49 year old woman does that? One who sees the fear, anxiety, pain, anguish, the overwhelming feelings that can sometimes accompany raising a child with autism. One who knows and understands that mama occasionally needs a break, or she might break. One who loves me unconditionally, no matter what, period. One who's been watching out for me my whole life. I am truly the fortunate one.
But, today, at this moment what I'm most thankful for is my amazing sister. I could never do this without her. She is my sounding board, my support, my cheerleader, my adviser. When I call her upset that Bambam can't do the activity the other kids at school were doing, she listens. And then she reminds me what he can do. And that he will do the other things too, in his own time. When I'm on my last nerve, she invites me to her house for an afternoon of "sister time". And if the stars line up and the gods are smiling, maybe, just maybe an overnight sister trip. She sends me mismatched socks in the mail with a picture of the other mismatched socks on her own feet. The note says: When having a very bad day, put on the sister socks and know that I'm standing with you in solidarity. What 49 year old woman does that? One who sees the fear, anxiety, pain, anguish, the overwhelming feelings that can sometimes accompany raising a child with autism. One who knows and understands that mama occasionally needs a break, or she might break. One who loves me unconditionally, no matter what, period. One who's been watching out for me my whole life. I am truly the fortunate one.
Tuesday, September 25, 2012
The Dentist, Round 2
After school started, it was finally my turn to go to the dentist. I haven't been in a "while". But with Bambam now in first grade, I'm hoping to have a little time to get some of these much neglected items done.
The first thing the dentist says (after no decay, yeah) is "I see you grind your teeth". I do not grind my teeth. He insists he sees wear patterns consistent with grinding. I insist I do not grind my teeth, never have. He is smiling and nodding his head. Its irritating. Then he asks if I have any extra stress in my life. At which point I laugh. Out loud. Almost hysterically. I think I scared him. He asks if I can reduce some of the stress. Am I seeing a therapist or my dentist? Not unless I get rid of the children or my parents. It is what it is and I deal the stress the best I can. And most days I think I'm doing a pretty good job of it.
He asks that I pay attention to what I'm doing when I feel the most stressed. I love my dentist, he's a great guy. But really, what I don't need is someone else telling me I'm too stressed, I need to slow down, take care of myself, blah, blah, blah. So I assure him I will, but I DO NOT GRIND MY TEETH. And off I run to pick up Bambam early for lunch so he can avoid the fire drill.
Skip to later that afternoon when Bambam is resisting getting changed and the whole house is smelling like poop. I'm trying to get him into the bathroom when I notice that (I'll be damned) I am CLENCHING MY TEETH! In my attempt to not yell, I've clamped my mouth shut. Hard. Huh. Stupid dentist. Now I have to tell him he was right, which he already knew.
How could I have not noticed this? Now I'm sure I've been doing it for several years.One more thing to stress about...
The first thing the dentist says (after no decay, yeah) is "I see you grind your teeth". I do not grind my teeth. He insists he sees wear patterns consistent with grinding. I insist I do not grind my teeth, never have. He is smiling and nodding his head. Its irritating. Then he asks if I have any extra stress in my life. At which point I laugh. Out loud. Almost hysterically. I think I scared him. He asks if I can reduce some of the stress. Am I seeing a therapist or my dentist? Not unless I get rid of the children or my parents. It is what it is and I deal the stress the best I can. And most days I think I'm doing a pretty good job of it.
He asks that I pay attention to what I'm doing when I feel the most stressed. I love my dentist, he's a great guy. But really, what I don't need is someone else telling me I'm too stressed, I need to slow down, take care of myself, blah, blah, blah. So I assure him I will, but I DO NOT GRIND MY TEETH. And off I run to pick up Bambam early for lunch so he can avoid the fire drill.
Skip to later that afternoon when Bambam is resisting getting changed and the whole house is smelling like poop. I'm trying to get him into the bathroom when I notice that (I'll be damned) I am CLENCHING MY TEETH! In my attempt to not yell, I've clamped my mouth shut. Hard. Huh. Stupid dentist. Now I have to tell him he was right, which he already knew.
How could I have not noticed this? Now I'm sure I've been doing it for several years.One more thing to stress about...
Thursday, September 13, 2012
The Terrible, Horrible, No Good, Very Bad Day
I understand that there are bad days. How would we recognize the good days if there were no bad ones? The bad ones serve a purpose, one being to help us recognize and savor the good ones. Even during the bad ones, I've always been a "glass half full" sort of girl. I believe in the motto "this too shall pass" and generally don't stay down for very long. At least in my prior life.
Enter Autism. A bad autism day is like a typical bad day on steroids. It can test my "glass half full" theory of life. And if there are several in a row, look out. Life with an autistic child is like living life through an intensifying magnifying glass. The bad days can be really bad. The meltdowns, the hypersensitivity, the inability to focus, listen, relate, sit for more than 1 minute. The constant jumping and bouncing, throwing, hitting, yelling, stimming, obsessing. Some days I wonder where this will all lead.
But just as the bad days can be really bad, the good days can be so amazing that I stand back in awe. The break throughs are hard fought and won and are such amazingly sweet victories. Absolutely.Nothing.Compares. Watching him successfully accomplish a new skill and then look at me (and I mean really look at me, in the eyes) and say "I did it!". There is just no sweeter moment for a mom. Little victories are just as sweet: a successful trip to the dentist where he actually opens his mouth, a completely clean and dry 24 hours, an appropriate social interaction with a child at the park, a successful day at school.
And sometimes you have to look for the silver lining in the dark cloud of a bad day. Yesterday was one of the bad ones. Really bad ones. A "call from the school" bad. After dropping Bambam back at school after lunch (yes, he comes home for lunch every day to decompress) I headed back to work. Within 20 minutes the school had called me. He was out of control. Hitting, kicking, throwing things. Unable to calm down. A full blown meltdown. After apologizing to my boss, I rushed to the school.
Not wanted to start the precedent of "if I act out, I get to go home", I instead stayed at the school all afternoon helping his team come up with ways to avoid this type of total meltdown, and what to do if it did happen. Step one was getting him to calm down. School is not the best environment to accomplish this, but we did our best. And after several 5 minute stints in the quiet spot, he eventurally got himself back in control. But as for working and learning, that part was done for the day. He was exhausted, eyes red and swollen from crying, and hungry. So, he had a snack, colored, told his aide about riding "Bert", looked at books until the school bell rang and I finally took him home.
However, once we got home, he did not get to use his favorite of all things, his iPad. We are trying to teach him the concept of rewards and consequences. We've been talking since school started about how he needs to be nice, stay in control, and work hard at school in order to get iPad when he gets home. This was the first day he didn't get it. And he was very dismayed. I wasn't sure if he was getting it, if he was making the connection. He just kept asking for his iPad. But, when Mr. Fixit came home I got my answer. Bambam almost attacked him with his monologue that went something like this: "Hi daddy I not nice school hitting kicking I no get iPad."
And that is my silver lining in this dark cloud of a day. He is beginning to get it! In the midst of a terrible, horrible, no good, very bad day, he is still learning and growing. And that quickly my tears of frustration turn to tears of joy.
Raising any child has its challenges with highs and lows. Raising an autistic child seems to me to have higher highs and lower lows. The roller coaster is that much bigger with sweeping hills and dropping valleys. It is exciting, scary, exhilarating, and most of all unknown. And yet isn't it the biggest roller coaster that always has the longest line? I've always said that parenting is not for the faint of heart. Parenting an autistic child? Well that's a whole new ride. Life is about the journey, hold on and try to enjoy that ride.
Enter Autism. A bad autism day is like a typical bad day on steroids. It can test my "glass half full" theory of life. And if there are several in a row, look out. Life with an autistic child is like living life through an intensifying magnifying glass. The bad days can be really bad. The meltdowns, the hypersensitivity, the inability to focus, listen, relate, sit for more than 1 minute. The constant jumping and bouncing, throwing, hitting, yelling, stimming, obsessing. Some days I wonder where this will all lead.
But just as the bad days can be really bad, the good days can be so amazing that I stand back in awe. The break throughs are hard fought and won and are such amazingly sweet victories. Absolutely.Nothing.Compares. Watching him successfully accomplish a new skill and then look at me (and I mean really look at me, in the eyes) and say "I did it!". There is just no sweeter moment for a mom. Little victories are just as sweet: a successful trip to the dentist where he actually opens his mouth, a completely clean and dry 24 hours, an appropriate social interaction with a child at the park, a successful day at school.
And sometimes you have to look for the silver lining in the dark cloud of a bad day. Yesterday was one of the bad ones. Really bad ones. A "call from the school" bad. After dropping Bambam back at school after lunch (yes, he comes home for lunch every day to decompress) I headed back to work. Within 20 minutes the school had called me. He was out of control. Hitting, kicking, throwing things. Unable to calm down. A full blown meltdown. After apologizing to my boss, I rushed to the school.
Not wanted to start the precedent of "if I act out, I get to go home", I instead stayed at the school all afternoon helping his team come up with ways to avoid this type of total meltdown, and what to do if it did happen. Step one was getting him to calm down. School is not the best environment to accomplish this, but we did our best. And after several 5 minute stints in the quiet spot, he eventurally got himself back in control. But as for working and learning, that part was done for the day. He was exhausted, eyes red and swollen from crying, and hungry. So, he had a snack, colored, told his aide about riding "Bert", looked at books until the school bell rang and I finally took him home.
However, once we got home, he did not get to use his favorite of all things, his iPad. We are trying to teach him the concept of rewards and consequences. We've been talking since school started about how he needs to be nice, stay in control, and work hard at school in order to get iPad when he gets home. This was the first day he didn't get it. And he was very dismayed. I wasn't sure if he was getting it, if he was making the connection. He just kept asking for his iPad. But, when Mr. Fixit came home I got my answer. Bambam almost attacked him with his monologue that went something like this: "Hi daddy I not nice school hitting kicking I no get iPad."
And that is my silver lining in this dark cloud of a day. He is beginning to get it! In the midst of a terrible, horrible, no good, very bad day, he is still learning and growing. And that quickly my tears of frustration turn to tears of joy.
Raising any child has its challenges with highs and lows. Raising an autistic child seems to me to have higher highs and lower lows. The roller coaster is that much bigger with sweeping hills and dropping valleys. It is exciting, scary, exhilarating, and most of all unknown. And yet isn't it the biggest roller coaster that always has the longest line? I've always said that parenting is not for the faint of heart. Parenting an autistic child? Well that's a whole new ride. Life is about the journey, hold on and try to enjoy that ride.
Tuesday, September 4, 2012
Personal Responsibility
In our house getting ready for the new school year includes not only school clothes shopping, and haircuts, but also trips to the dentist. In the past 2 days I've dragged all 3 kids to the dentist.
Miracle Boy was first. Teeth look great, no decay. But a broken tooth from an unfortunate incident with a surf board last summer! I remember the incident. He told me about the 2 broken brackets on his braces and we got those fixes. No one mentioned a broken tooth, not him, not the orthodontist. Sigh. It's getting fixed now. Luckily, there is no decay and he should be good as new shortly.
The Quiet One was next. Not so great. 8 cavities. 8 cavities in one year??? At least I think it's 1 year. The Quiet One came to live with us full time last summer. I'm assuming his mom took him to the dentist regularly before that. I'm pretty sure she did. But, 8 cavities??? Wow. A BIG lecture from the dentist on personal hygiene and diet (read stop going to 7-11 and buying junk food and energy drinks).
As I stand listening to the dentist tell me about his 8 current cavities that need filled and the dozen more they can see forming in the x-rays, I'm left speechless. This is difficult for me. For lack of a better term, I "inherited" The Quiet One last year at the age of 15, almost 16. Let me repeat, almost 16. Almost grown. Habits formed. Attitudes firmly in place.
And here I'm going to insert the back story:
Mr. Fixit and I starting dating when The Quiet One was 2 and Miracle Boy was 3. 6 years later, when the boys were 8 and 9, we married. I've been around for potty training, starting school, learning to tie shoes, learning to read, etc. But, since The Quiet One lived primarily with his mom, I was always sort of on the outskirts. I was not the primary caregiver, disciplinarian, teacher. I offered support and reinforcement when he was with us, but didn't take a leading role. I don't like to step on anyone's toes.
When The Quiet One was 10, he was living out of state with his mom. Due to distance, our visits were less frequent. And we could see changes happening. At that time I had a frank conversation with Mr. Fixit which went as follows: "You need to do what you can to get him up here full time. We can see what is happening. He is struggling in school. He is struggling with making appropriate choices and gaining personal responsibility. He needs more assistance and guidance now. I do not want to wait until he is a teenager with bigger issues before he is shipped up to us as a last resort." There were a myriad of signs that things were starting to go in a questionable direction for him. My big fear was that I would get a teenager failing school, dabbling in drugs, etc. With another teenager and a younger child in the household, that was cause of great concern for me. Right or wrong, those were my feelings.
Flash forward 4 years and we get a call in early June. The Quiet One's mom caught him smoking pot and is sending him up to us right now (2 weeks before school is out) for the whole summer. He is just finishing 8th grade. He has a cumulative GPA of a 0.83. I do not understand how a kid with a 0.83 GPA is promoted from 8th grade into high school. (In my humble opinion this symbolizes what is broken in our educational system. But that is another post.)
So we spend a summer trying to convince everyone involved that he should remain up here for the coming school year. But It's a no go. In August he goes "back home" to begin his Freshman year in high school. We did get an agreement that if he failed any classes his first semester or had any other trouble, he would return in January to live with us. January came with an F on his report card, but no child. Frustration does not begin to portray what I was feeling. Being in a position with absolutely no authority, who's opinion really doesn't count, and watching a child slowly failing was more than I could handle. I needed to either step in and do something, or wash my hands of the whole affair and not be forced to watch. I could do neither.
During the 2nd semester of his Freshman year he proceeded to get charged with arson (set a garbage can on fire at school), fail 2 more classes, and get charged with possession of a controlled substance (on the school campus). Finally, at the age of 15, failing school, experimenting with drugs, and with 2 serious charges against him, he was shipped up to us as a "last resort". My worst nightmare, right?
Really, not so much. What I need to explain about The Quiet One is that he's not the "bad kid" he may sound like. He's a kid who needs a lot of guidance and quite honestly still needs some hand holding at the age of 16. He needs very clear rules and guidelines. Personal responsibility and accountability are not high on his list. His biggest problem is that he's a follower. And he got mixed up with "the wrong crowd". Being a follower, he did what his friends were doing. No homework and making very poor choices. We knew the first step to turning things around was getting him away from the kids he was "following".
And what a difference a year can make. He has made up 2 of the classes he failed (tutoring through summer school), passed all his classes his sophomore year (not without struggles, loss of privileges, and lots and lots of hand holding), works part time in our business, and has not been in any trouble. School will always be difficult for him, our goal is to see him graduate. He is polite and respectful, his new friend's parents (whom we all know) enjoy having him over, he even has a girlfriend. That's not to say life is all rosy and perfect. Remember the 8 cavities? Its a far cry from arson, but we don't want him running around toothless at the age of 20.
As I said, personal responsibility is not high on his list. His room is a pig sty, he clearly doesn't take good care of his teeth, he leaves dishes and garbage all over the house, home work will not get done without reminding, nothing will get done without some prodding. This leads me to my current frustration: How to teach personal responsibility to a 16 year old. This is the age where we should be backing off, not stepping in. In two short years he will be moving on to whatever comes next for him. And I fear he will not be prepared. Is 16 too late to teach these things? I don't know, but we're on a path to find out. And we'll start with letting him know that after this round of fillings, he will be paying for any future fillings out of his own money. Welcome to real life consequences.
Wish us luck.
Miracle Boy was first. Teeth look great, no decay. But a broken tooth from an unfortunate incident with a surf board last summer! I remember the incident. He told me about the 2 broken brackets on his braces and we got those fixes. No one mentioned a broken tooth, not him, not the orthodontist. Sigh. It's getting fixed now. Luckily, there is no decay and he should be good as new shortly.
The Quiet One was next. Not so great. 8 cavities. 8 cavities in one year??? At least I think it's 1 year. The Quiet One came to live with us full time last summer. I'm assuming his mom took him to the dentist regularly before that. I'm pretty sure she did. But, 8 cavities??? Wow. A BIG lecture from the dentist on personal hygiene and diet (read stop going to 7-11 and buying junk food and energy drinks).
As I stand listening to the dentist tell me about his 8 current cavities that need filled and the dozen more they can see forming in the x-rays, I'm left speechless. This is difficult for me. For lack of a better term, I "inherited" The Quiet One last year at the age of 15, almost 16. Let me repeat, almost 16. Almost grown. Habits formed. Attitudes firmly in place.
And here I'm going to insert the back story:
Mr. Fixit and I starting dating when The Quiet One was 2 and Miracle Boy was 3. 6 years later, when the boys were 8 and 9, we married. I've been around for potty training, starting school, learning to tie shoes, learning to read, etc. But, since The Quiet One lived primarily with his mom, I was always sort of on the outskirts. I was not the primary caregiver, disciplinarian, teacher. I offered support and reinforcement when he was with us, but didn't take a leading role. I don't like to step on anyone's toes.
When The Quiet One was 10, he was living out of state with his mom. Due to distance, our visits were less frequent. And we could see changes happening. At that time I had a frank conversation with Mr. Fixit which went as follows: "You need to do what you can to get him up here full time. We can see what is happening. He is struggling in school. He is struggling with making appropriate choices and gaining personal responsibility. He needs more assistance and guidance now. I do not want to wait until he is a teenager with bigger issues before he is shipped up to us as a last resort." There were a myriad of signs that things were starting to go in a questionable direction for him. My big fear was that I would get a teenager failing school, dabbling in drugs, etc. With another teenager and a younger child in the household, that was cause of great concern for me. Right or wrong, those were my feelings.
Flash forward 4 years and we get a call in early June. The Quiet One's mom caught him smoking pot and is sending him up to us right now (2 weeks before school is out) for the whole summer. He is just finishing 8th grade. He has a cumulative GPA of a 0.83. I do not understand how a kid with a 0.83 GPA is promoted from 8th grade into high school. (In my humble opinion this symbolizes what is broken in our educational system. But that is another post.)
So we spend a summer trying to convince everyone involved that he should remain up here for the coming school year. But It's a no go. In August he goes "back home" to begin his Freshman year in high school. We did get an agreement that if he failed any classes his first semester or had any other trouble, he would return in January to live with us. January came with an F on his report card, but no child. Frustration does not begin to portray what I was feeling. Being in a position with absolutely no authority, who's opinion really doesn't count, and watching a child slowly failing was more than I could handle. I needed to either step in and do something, or wash my hands of the whole affair and not be forced to watch. I could do neither.
During the 2nd semester of his Freshman year he proceeded to get charged with arson (set a garbage can on fire at school), fail 2 more classes, and get charged with possession of a controlled substance (on the school campus). Finally, at the age of 15, failing school, experimenting with drugs, and with 2 serious charges against him, he was shipped up to us as a "last resort". My worst nightmare, right?
Really, not so much. What I need to explain about The Quiet One is that he's not the "bad kid" he may sound like. He's a kid who needs a lot of guidance and quite honestly still needs some hand holding at the age of 16. He needs very clear rules and guidelines. Personal responsibility and accountability are not high on his list. His biggest problem is that he's a follower. And he got mixed up with "the wrong crowd". Being a follower, he did what his friends were doing. No homework and making very poor choices. We knew the first step to turning things around was getting him away from the kids he was "following".
And what a difference a year can make. He has made up 2 of the classes he failed (tutoring through summer school), passed all his classes his sophomore year (not without struggles, loss of privileges, and lots and lots of hand holding), works part time in our business, and has not been in any trouble. School will always be difficult for him, our goal is to see him graduate. He is polite and respectful, his new friend's parents (whom we all know) enjoy having him over, he even has a girlfriend. That's not to say life is all rosy and perfect. Remember the 8 cavities? Its a far cry from arson, but we don't want him running around toothless at the age of 20.
As I said, personal responsibility is not high on his list. His room is a pig sty, he clearly doesn't take good care of his teeth, he leaves dishes and garbage all over the house, home work will not get done without reminding, nothing will get done without some prodding. This leads me to my current frustration: How to teach personal responsibility to a 16 year old. This is the age where we should be backing off, not stepping in. In two short years he will be moving on to whatever comes next for him. And I fear he will not be prepared. Is 16 too late to teach these things? I don't know, but we're on a path to find out. And we'll start with letting him know that after this round of fillings, he will be paying for any future fillings out of his own money. Welcome to real life consequences.
Wish us luck.
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