Most of you have heard me use the term "meltdown" to describe what happens when Wyatt becomes overstimulated, but it just occurred to me that I've never really explained what a meltdown is like. I know the general assumption is that it's comparable to a tantrum, and in some ways it is, but there are also significant differences. So, to give you some insight into what behavior issues are like to deal with for the parent of a child with autism, I'm going to do something I haven't done before. I'm going to try and describe what goes on when Wyatt has a meltdown.
To really understand this, you have to understand that for autistic people, the normal filters don't work properly. Their senses are overly acute, with the most severely autistic it's most or all of the senses, for Wyatt it's primarily his hearing. Imagine being in a crowded mall around the holidays - music blaring, bright colors everywhere, lights flashing, smells coming at you from every direction, noise, being jostled feeling encroached upon by touch, scent, sound and sights. It's overwhelming, right? Now imagine living with this every waking moment of every day. This is what the world is like for someone with autism.
Part of the reason that autistics shut down is as a coping mechanism to deal with the constant sensory assault. With Wyatt, I've spent years gradually increasing his exposure to sensory input, in order to desensitize him to it, and it's worked pretty well. There are times though when he's getting more input than he can handle, and that's when the meltdowns occur.
When Wy has a meltdown, he becomes very anxious and agitated. he'll start stimming - hand flapping, walking in circles, covering his ears, sometimes he'll rock. He gets a very worried expression on his face, his voice gets higher and louder, his arm movements get very spastic, and his speech changes.
Wyatt's made amazing progress with his speech, but when he's in meltdown mode, he regresses to where he was about 3 years ago. He'll give out occasional original sentences, but most of his speech will be lines repeated verbatim from movies, cartoons or video games. The thing is, even though he's repeating dialogue, he uses phrases that express what he's feeling at the moment. He'll say things like "It's all my fault, I'm broken, somethings wrong with me, I'm a monster, I don't deserve to have friends".
It's heartbreaking to me, to hear this beautiful little boy say these things about himself. It's also hard to see how other people react to him when he gets like this. I love my mother dearly, and she adores Wyatt, but when he's having a meltdown, she just has no patience for him. My father does better with him, my father is far more patient by nature. Other people, people that don't know him will stare, yell at him, tell me he needs to be punished or spanked. None of which is going to help.
What I've found works best with him, is to remove him from the situation, take him somewhere quiet, and just wait it out. There's no point trying to reason with him, because it's just going to prolong things. So I sit, I hug him if he'll let me, rock him if he can stay still that long, and just try to reassure him that it's ok, and that he'll calm down soon. Sometimes I can distract him, but more often than not it's a waiting game. When he's calmed down enough to talk, we'll talk about what happened, what triggered the episode, and try and come up with ways that he can cope better next time. Sometimes it works, sometimes it'll just set him off again.
What I DON'T do, is let him use the meltdown as a way to get off the hook for bad behavior. If he did or said something he needs to apologize for, once he's calmed, I make him apologize. His autism is part of who he is, but it's not a free pass for him to act like a brat, and I make sure he knows this. Just because he's autistic doesn't mean he doesn't have to be polite, use good manners, or behave himself in public.
Usually it takes him about 45 min to go from full blown meltdown, to crying, to calming down and then back to himself. That may sound like a long time to you, but believe me, it's better than the 2-3 hours it was 6 years ago, many of which included him getting so wound up he threw up. Back then, meltdowns used to happen almost once a day. Now it's maybe once or twice a month, sometimes longer.
I know once he hits early puberty, there may very well be an increase in the meltdowns, but I'm hoping that by then, he'll have internalized enough coping mechanisms to be able to recognize when one is coming, and stop it early.
So that was your lesson in meltdown behavior. Any questions?
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Sunday, September 20, 2009
OMG Hi! - You popped into my thoughts today kiddo.
Just a little over 2 years ago, a very sweet, very special friend of mine passed away, and he's been on my mind a lot the past few days.
Maybe it's the looming specter of Wyatt's impending adolescence that's made me think about him, like Wyatt he was also on the autism spectrum. He had Aspergers Syndrome, a high functioning form of autism.
2 years from now, Wyatt will be starting Jr High School. It's a frightening thought for me, I know what it's like to be different, to not fit in, and I remember very vividly just how cruel children can be to someone who doesn't fit into the mainstream. Wy knows he's different, to a degree, but he hasn't had to deal too much with teasing because he's in a specialized classroom for the majority of the school day. He's been mainstreaming over the last couple of years, and he's doing well enough that his teacher and I have agreed to increase the amount of time he spends in a typical 4th grade class, but it's a mixed blessing. On one hand I'm delighted that he's able to keep up academically, that he's working almost completely on grade level. On the other hand, I worry about the day he comes home crying because someone looking to climb further up the playground social ladder called him a retard.
A friend of mine told me once that our job as parents is to teach our children how to live in this world without us, and that it starts the moment they cut the cord.
Lesson 1, breathe on your own.
Everything I've done with Wyatt, from the day he was diagnosed with a developmental delay, has been working towards that end. The sign language, the speech therapy, the play therapy, social interaction, tactile and auditory desensitization, the countless other therapies and behavior modification tools we've brought into out arsenal, all aimed at helping him learn to function as independently as he possibly can.
I'm very hopeful for his future. I have no reason to think that he won't go to college, have a job, and eventually live on his own. But the next 10 years are going to as hard, if not harder than his toddler hood was, for both of us.
Maybe that's why my friend has been on my mind so much lately. The suicide rate for teens with Aspergers and High Functioning Autism is believed to be much higher than in typically developing teens, unfortunately I haven't been able to find a solid figure. But it makes sense. Adolescence is difficult enough, with the growth spurts and raging hormones. Add in the social difficulties of Autism- the inability to read social cues, difficulty carrying on a "normal" conversation, the sensory overload, the jerks and hand flapping, and it's easy to see why so many autistic teens are on medication for depression and anxiety.
Right now, I guess all I can do is to continue working with Wy on social skills, and make sure he knows every day that he's loved and accepted for exactly who he is. Hopefully I've given him what he needs in terms of self esteem, to carry him through the rough waters ahead.
So, as a reminder to myself, and in memory of Chris, I'm reposting the blog I wrote shortly after Chris died.
Wednesday, August 29, 2007
For Christopher
My heart is aching right now for a mother in Canada. I've never met her, I don't even know her name, but I'm crying for her just the same.
I knew her son, first from the Vote For The Worst message board, then from another site that we were both on. Last night this sweet, funny, and very sad young man took his life. He was 16.
I'm devastated by the loss of a boy that I thought of like a nephew. I'm sad that such a great kid thought so little of himself that he felt the world would be better off without him. I'm also so angry at him for doing this to himself.
I think about my own son who is starting college next week, and how I'll be spending this weekend helping him move into his dorm. I think about all the expense, the drive up to NY, the cost of tuition and books, worrying about him being on his own.
Then I think about this boys mother, who will never experience any of this with her son. I think about how empty her house must feel. I can see her closing the door to the bedroom where he died because to look in there is just to painful. I picture her holding his first grade picture in her hands, trying to understand what happened to her beautiful little boy. I imagine her pouring over every second of the past few days, searching for clues, trying to understand, desperately wanting to turn back the clock to the second before he decided to end his brief life so she can wrap him in her arms and tell him how very precious he is to her.
My heart is aching for a mother in Canada right now.
So, in honor of that mother, I will hold both of my boys close to my heart. I will whisper in their ear, and tell them how precious they are to me.
Maybe it's the looming specter of Wyatt's impending adolescence that's made me think about him, like Wyatt he was also on the autism spectrum. He had Aspergers Syndrome, a high functioning form of autism.
2 years from now, Wyatt will be starting Jr High School. It's a frightening thought for me, I know what it's like to be different, to not fit in, and I remember very vividly just how cruel children can be to someone who doesn't fit into the mainstream. Wy knows he's different, to a degree, but he hasn't had to deal too much with teasing because he's in a specialized classroom for the majority of the school day. He's been mainstreaming over the last couple of years, and he's doing well enough that his teacher and I have agreed to increase the amount of time he spends in a typical 4th grade class, but it's a mixed blessing. On one hand I'm delighted that he's able to keep up academically, that he's working almost completely on grade level. On the other hand, I worry about the day he comes home crying because someone looking to climb further up the playground social ladder called him a retard.
A friend of mine told me once that our job as parents is to teach our children how to live in this world without us, and that it starts the moment they cut the cord.
Lesson 1, breathe on your own.
Everything I've done with Wyatt, from the day he was diagnosed with a developmental delay, has been working towards that end. The sign language, the speech therapy, the play therapy, social interaction, tactile and auditory desensitization, the countless other therapies and behavior modification tools we've brought into out arsenal, all aimed at helping him learn to function as independently as he possibly can.
I'm very hopeful for his future. I have no reason to think that he won't go to college, have a job, and eventually live on his own. But the next 10 years are going to as hard, if not harder than his toddler hood was, for both of us.
Maybe that's why my friend has been on my mind so much lately. The suicide rate for teens with Aspergers and High Functioning Autism is believed to be much higher than in typically developing teens, unfortunately I haven't been able to find a solid figure. But it makes sense. Adolescence is difficult enough, with the growth spurts and raging hormones. Add in the social difficulties of Autism- the inability to read social cues, difficulty carrying on a "normal" conversation, the sensory overload, the jerks and hand flapping, and it's easy to see why so many autistic teens are on medication for depression and anxiety.
Right now, I guess all I can do is to continue working with Wy on social skills, and make sure he knows every day that he's loved and accepted for exactly who he is. Hopefully I've given him what he needs in terms of self esteem, to carry him through the rough waters ahead.
So, as a reminder to myself, and in memory of Chris, I'm reposting the blog I wrote shortly after Chris died.
Wednesday, August 29, 2007
For Christopher
My heart is aching right now for a mother in Canada. I've never met her, I don't even know her name, but I'm crying for her just the same.
I knew her son, first from the Vote For The Worst message board, then from another site that we were both on. Last night this sweet, funny, and very sad young man took his life. He was 16.
I'm devastated by the loss of a boy that I thought of like a nephew. I'm sad that such a great kid thought so little of himself that he felt the world would be better off without him. I'm also so angry at him for doing this to himself.
I think about my own son who is starting college next week, and how I'll be spending this weekend helping him move into his dorm. I think about all the expense, the drive up to NY, the cost of tuition and books, worrying about him being on his own.
Then I think about this boys mother, who will never experience any of this with her son. I think about how empty her house must feel. I can see her closing the door to the bedroom where he died because to look in there is just to painful. I picture her holding his first grade picture in her hands, trying to understand what happened to her beautiful little boy. I imagine her pouring over every second of the past few days, searching for clues, trying to understand, desperately wanting to turn back the clock to the second before he decided to end his brief life so she can wrap him in her arms and tell him how very precious he is to her.
My heart is aching for a mother in Canada right now.
So, in honor of that mother, I will hold both of my boys close to my heart. I will whisper in their ear, and tell them how precious they are to me.
Wyatt, Target and Pretty Women
Wyatt got money from Nana and Grandpa for his birthday, and it's been burning a hole in his pocket for days now. When I said that to him he checked his pants and said "But my pants aren't on fire Mom.", so I had to explain to him what that meant! (Gotta love that autistic literal interpretation!)
I had taken him to the Target by our house to pick out what he wanted,and he chose a Lego City Camper set, which he put together all by himself. He sat down with the instruction book, figured out each step, and assembled the camper perfectly, which was really impressive for him. Usually he has a hard time staying focused on a task, so I was really proud of him. (I see LOTS more Lego sets in his future).
The other thing he wanted was a very specific fire truck (because I guess the 8 that he already has just aren't quite enough for him), so we went to the Target in Kernersville last night, before I dropped him off at my folks house.
Well, Saturday at the Kernersville Target is apparently Pretty Teenage Girl day, so my little boy was in hog heaven! He picked out his truck, and then he cruised the store like a newly divorced 40 year old man at a singles bar. He went from girl to girl, with his pick up lines at the ready:
"Hi, what's your name?"
(as he grabs her hand and starts walking with her)
"I like your name, mine's Wyatt, this is my new Firetruck, it's my birthday present"
(as he gazes up adoringly at her)
"You're really pretty, can I have a hug"
(as he also puckers up and kisses her cheek)
"Will you be my girlfriend? I'm going to join the Naked Brothers Band and move to NY and be a rock star"
(as he starts scouting out the next conquest)
"I have to go with my Mom now, thanks for being my girlfriend"
(as he moves on to the next pretty girl)
Oh, I'm having High School nightmares already, and he's barely even 9!!!!
I had taken him to the Target by our house to pick out what he wanted,and he chose a Lego City Camper set, which he put together all by himself. He sat down with the instruction book, figured out each step, and assembled the camper perfectly, which was really impressive for him. Usually he has a hard time staying focused on a task, so I was really proud of him. (I see LOTS more Lego sets in his future).
The other thing he wanted was a very specific fire truck (because I guess the 8 that he already has just aren't quite enough for him), so we went to the Target in Kernersville last night, before I dropped him off at my folks house.
Well, Saturday at the Kernersville Target is apparently Pretty Teenage Girl day, so my little boy was in hog heaven! He picked out his truck, and then he cruised the store like a newly divorced 40 year old man at a singles bar. He went from girl to girl, with his pick up lines at the ready:
"Hi, what's your name?"
(as he grabs her hand and starts walking with her)
"I like your name, mine's Wyatt, this is my new Firetruck, it's my birthday present"
(as he gazes up adoringly at her)
"You're really pretty, can I have a hug"
(as he also puckers up and kisses her cheek)
"Will you be my girlfriend? I'm going to join the Naked Brothers Band and move to NY and be a rock star"
(as he starts scouting out the next conquest)
"I have to go with my Mom now, thanks for being my girlfriend"
(as he moves on to the next pretty girl)
Oh, I'm having High School nightmares already, and he's barely even 9!!!!
Friday, September 11, 2009
Wyatt is in LUUUUUUVVVVVV!
This past friday was our Path Of The Moon Summer Ceilidh, which was put together by the lovely RavenHarte. She worked her BUTT off on this, pulled together some amazing talent, and it turned out to be our most successful fundraiser this year, and may very well be the most successful one we've ever had.
It was an amazing night!
I was a little anxious about bringing Wyatt with me. He gets overstimulated easily, and I really thought with all the people, and the music, that we'd end up having to make a hasty exit.
But I couldn't have been more wrong.
Wyatt LOVED it, he enjoyed all the musical acts (even though he kept his fingers firmly planted in his ears), but his very favorite thing of the night were the lovely ladies of Torque, the wonderful belly dancing troupe.
Wy definitely has a type, he loves women with long dark hair, and especially exotic looking women, so belly dancers are right up his alley. He got one look at these ladies, and was over to them like a SHOT, holding their hands, hugging them, inviting them back to Nana's house to dance for him, and telling all four of them that he wanted to marry them!
He especially loved Sashame, and parked himself right between she and Heather for most of the rest of the evening. I had bought him a clip on flower from Tiger RoxXx, and he asked Sashame if she liked his flower. She told him it was gorgeous and he asked her "Do you think I'M gorgeous?"
Of course she did, I mean have you seen my kid? Who could resist him?
Sashame and the ladies were so sweet with him, she even made it a point to go out and give him a kiss goodbye before we left. As we were driving over to my parents house, Wy let out a long sigh, looked at me with his beautiful hazel eyes and said "Mommy, I'm in loooooooove".
I asked who he was in love with and he said "The belly dancers" I asked which one and he said "All of them but I love Sashame best".
When I got over to my parents house the next day, my father was hysterical. He said all Wyatt talked about all day was how he was going to marry the belly dancers, that they were so beautiful and that he was in love with them. My mother thought it was just adorable.
It was an amazing night!
I was a little anxious about bringing Wyatt with me. He gets overstimulated easily, and I really thought with all the people, and the music, that we'd end up having to make a hasty exit.
But I couldn't have been more wrong.
Wyatt LOVED it, he enjoyed all the musical acts (even though he kept his fingers firmly planted in his ears), but his very favorite thing of the night were the lovely ladies of Torque, the wonderful belly dancing troupe.
Wy definitely has a type, he loves women with long dark hair, and especially exotic looking women, so belly dancers are right up his alley. He got one look at these ladies, and was over to them like a SHOT, holding their hands, hugging them, inviting them back to Nana's house to dance for him, and telling all four of them that he wanted to marry them!
He especially loved Sashame, and parked himself right between she and Heather for most of the rest of the evening. I had bought him a clip on flower from Tiger RoxXx, and he asked Sashame if she liked his flower. She told him it was gorgeous and he asked her "Do you think I'M gorgeous?"
Of course she did, I mean have you seen my kid? Who could resist him?
Sashame and the ladies were so sweet with him, she even made it a point to go out and give him a kiss goodbye before we left. As we were driving over to my parents house, Wy let out a long sigh, looked at me with his beautiful hazel eyes and said "Mommy, I'm in loooooooove".
I asked who he was in love with and he said "The belly dancers" I asked which one and he said "All of them but I love Sashame best".
When I got over to my parents house the next day, my father was hysterical. He said all Wyatt talked about all day was how he was going to marry the belly dancers, that they were so beautiful and that he was in love with them. My mother thought it was just adorable.
Apparently I'm an Asshole Magnet
I so hate having to deal with Wyatts father. As Cindi so aptly put it, he's a tool.
I've been having my yearly school district battle, and after talking to the director of the Exceptional Childrens programs, I'm going to have Wyatt transfer to Walkertown Elementary. The Principal there is much more receptive to EC Kids, having been an EC teacher, the programs is at the same level as the one he attended last year, and Walkertown is closer to my parents, which will make it easier for them to help me out on days that I have late classes.
I've had Wy's school records and his Individual Education Plan transferred over, and I'm going in tomorrow to fill out the contact paperwork, and set up school bus transportation for him. There's also an open house on the 19th, where Wyatt will be able to come see his classroom, meet his classmates and teacher, and get to look around the school before starting there. So I've got everything in order for him.
I call his father today, to make sure that he's up to speed on all of this. He knew Wy was going to transfer, and in actuality, this makes things easier for him, because Walkertown is closer to where he lives. I told him everything that was set up for Wyatt, and he says to me - "You're not going to drive him to school any more, you're going to make him ride the bus?".
Like I had told him I was going to push bamboo shoots under Wyatts nails.
I said "Yes John, he'll be 9 next month, I don't see any reason why he can't ride the schoolbus." He's ridden the bus before, in preschool and in kindergarten and first grade. The only reason he hasn't ridden the past 2 years was that he was attending Jefferson as a transfer student, which meant that the school district wouldn't provide bus transportation.
Then the tool tells me "Well, I'm going to have to go over there and make sure that everything is acceptable." I asked him if he really thought I would put Wyatt into an unacceptable school, and he said "Well I don't know Peg, you've had a lot of changes in your life lately, I just want to make sure Wyatt's getting the attention he needs"
If I could have crawled through the phone and choked the fucker I would have.
He seems to think that because Tim and I aren't together any more, that gives him the right to make veiled accusations that I'm neglecting Wyatt, or that somehow my husbands infidelity and abandonment of his family is a reflection on my parenting skills. He conveniently forgets that he ran out on his wife and son when Wyatt was 2, in fact he did it on the day we were supposed to have a 2nd birthday party for Wyatt. He also seems to conveniently forget that he's had a domestic violence protective order filed against him for verbally abusing me, backing me up against a wall, pulling his fist back and threatening to hit me in front of our 2 year old son.
The other thing that he seems to forget is that I have primary custody of Wyatt, that I have made every decision regarding Wyatts autism diagnosis, therapies, treatments and education, with virtually no input from him. The few times that he HAS attempted to make any kind of suggestions he's suggested therapies that I used with Wyatt 3-4 years earlier, and Wy has long outgrown. He wanted Wyatt to have chelation and hyperbaric O2 therapy done - treatments intended to remove heavy metals from vaccines that supposedly cause autism. I had to remind him that the vaccines Wyatt received were thimerisol (mercury based preservative) free, that there have been no credible scientific studies proving that chelation has any effect whatsoever on autistic children, and that chelation is highly experimental and has a high incidence of potentially dangerous side effects.
I've gone out of my way to treat him decently, to include him in every aspect of Wyatts life, to make sure that he's up to date on everything that's going on with Wy, and this is the kind of bullshit I get in return. He's condescending, insulting, and rude every time he comes over to pick Wyatt up. He makes snide little comments like "Has Wyatt eaten today?" or "Is that what he's going to wear?" or "Did you remember to have him do his homework?" He's also threatened twice to take me to court and fight me for custody, claiming he had a lawyer. Both times I told him to go ahead, and he ended up backing down and admitting he didn't have a lawyer after all.
God he's just SUCH an asshole!
Right now he's pissed because I've told him that I need for him to pick up more time with Wyatt, and that if he continues to pay his child support late I'm going to have it garnished from his paycheck. His response to that was to tell me that Wyatt can come live with him every other week and we'll eliminate child support all together.
That's not going to happen. I'm not going to shuttle Wyatt between 2 homes every week, that's too much transition and too much inconsistency for him, it's not in his best interests. He's already had enough major changes in his life this year, I'm not going to force any more on him, that's not fair to him. And honestly, I don't think John is capable of dealing with Wyatt on a full time basis, I don't think he has the stamina or the patience in the long run. I know what his temper is like, he stuffs everything down until he reaches the boiling point, and then explodes over something inconsequential (like, say, a sink full of dirty dishes). He also has bouts of severe depression, which he refuses to get treatment for. He can handle Wy for 1-2 days at a time, or for the occasional week, but raising an autistic child full time is a whole different ball game, and he's not equipped for it.
So, I think maybe it's time for me to verbally smack him down again, put him in his place, and make it crystal clear to him that I will NOT tolerate this bullshit from him. I've gone out of my way to try and keep things on an even keel for Wyatts sake, but I've about reached my limit with this ass monkey.
I've been having my yearly school district battle, and after talking to the director of the Exceptional Childrens programs, I'm going to have Wyatt transfer to Walkertown Elementary. The Principal there is much more receptive to EC Kids, having been an EC teacher, the programs is at the same level as the one he attended last year, and Walkertown is closer to my parents, which will make it easier for them to help me out on days that I have late classes.
I've had Wy's school records and his Individual Education Plan transferred over, and I'm going in tomorrow to fill out the contact paperwork, and set up school bus transportation for him. There's also an open house on the 19th, where Wyatt will be able to come see his classroom, meet his classmates and teacher, and get to look around the school before starting there. So I've got everything in order for him.
I call his father today, to make sure that he's up to speed on all of this. He knew Wy was going to transfer, and in actuality, this makes things easier for him, because Walkertown is closer to where he lives. I told him everything that was set up for Wyatt, and he says to me - "You're not going to drive him to school any more, you're going to make him ride the bus?".
Like I had told him I was going to push bamboo shoots under Wyatts nails.
I said "Yes John, he'll be 9 next month, I don't see any reason why he can't ride the schoolbus." He's ridden the bus before, in preschool and in kindergarten and first grade. The only reason he hasn't ridden the past 2 years was that he was attending Jefferson as a transfer student, which meant that the school district wouldn't provide bus transportation.
Then the tool tells me "Well, I'm going to have to go over there and make sure that everything is acceptable." I asked him if he really thought I would put Wyatt into an unacceptable school, and he said "Well I don't know Peg, you've had a lot of changes in your life lately, I just want to make sure Wyatt's getting the attention he needs"
If I could have crawled through the phone and choked the fucker I would have.
He seems to think that because Tim and I aren't together any more, that gives him the right to make veiled accusations that I'm neglecting Wyatt, or that somehow my husbands infidelity and abandonment of his family is a reflection on my parenting skills. He conveniently forgets that he ran out on his wife and son when Wyatt was 2, in fact he did it on the day we were supposed to have a 2nd birthday party for Wyatt. He also seems to conveniently forget that he's had a domestic violence protective order filed against him for verbally abusing me, backing me up against a wall, pulling his fist back and threatening to hit me in front of our 2 year old son.
The other thing that he seems to forget is that I have primary custody of Wyatt, that I have made every decision regarding Wyatts autism diagnosis, therapies, treatments and education, with virtually no input from him. The few times that he HAS attempted to make any kind of suggestions he's suggested therapies that I used with Wyatt 3-4 years earlier, and Wy has long outgrown. He wanted Wyatt to have chelation and hyperbaric O2 therapy done - treatments intended to remove heavy metals from vaccines that supposedly cause autism. I had to remind him that the vaccines Wyatt received were thimerisol (mercury based preservative) free, that there have been no credible scientific studies proving that chelation has any effect whatsoever on autistic children, and that chelation is highly experimental and has a high incidence of potentially dangerous side effects.
I've gone out of my way to treat him decently, to include him in every aspect of Wyatts life, to make sure that he's up to date on everything that's going on with Wy, and this is the kind of bullshit I get in return. He's condescending, insulting, and rude every time he comes over to pick Wyatt up. He makes snide little comments like "Has Wyatt eaten today?" or "Is that what he's going to wear?" or "Did you remember to have him do his homework?" He's also threatened twice to take me to court and fight me for custody, claiming he had a lawyer. Both times I told him to go ahead, and he ended up backing down and admitting he didn't have a lawyer after all.
God he's just SUCH an asshole!
Right now he's pissed because I've told him that I need for him to pick up more time with Wyatt, and that if he continues to pay his child support late I'm going to have it garnished from his paycheck. His response to that was to tell me that Wyatt can come live with him every other week and we'll eliminate child support all together.
That's not going to happen. I'm not going to shuttle Wyatt between 2 homes every week, that's too much transition and too much inconsistency for him, it's not in his best interests. He's already had enough major changes in his life this year, I'm not going to force any more on him, that's not fair to him. And honestly, I don't think John is capable of dealing with Wyatt on a full time basis, I don't think he has the stamina or the patience in the long run. I know what his temper is like, he stuffs everything down until he reaches the boiling point, and then explodes over something inconsequential (like, say, a sink full of dirty dishes). He also has bouts of severe depression, which he refuses to get treatment for. He can handle Wy for 1-2 days at a time, or for the occasional week, but raising an autistic child full time is a whole different ball game, and he's not equipped for it.
So, I think maybe it's time for me to verbally smack him down again, put him in his place, and make it crystal clear to him that I will NOT tolerate this bullshit from him. I've gone out of my way to try and keep things on an even keel for Wyatts sake, but I've about reached my limit with this ass monkey.
How To Handle a Tool
No, this is NOT a home improvement note.
Well OK, in a way it is.
The Tool came to pick up Wy for the weekend this morning. Wy slept in, so when Tool got here, Wy was still in his PJ's eating breakfast. I invited him in to sit down, and offered him coffee, which he refused as always, and he stood in the doorway, not looking me in the eye, again as always.
Wy finished his breakfast, and I sent him upstairs to get dressed and told his father " Sit down, We need to have a talk".
I started off by telling him, I know he loves Wy, and that he wants what's best for him, and that I want the same thing too. Then I let him have it - not yelling, not crazed psycho, very calmly and clearly.
I told him that since Tim and I split up, I've seen a change in his attitude towards me, and I don't like it. Told him he's become condescending and rude, and I'm not tolerating it from him. I said that over the last 7 years I've done 90% of the parenting work, and the reason Wyatt functions at the level he does is because of the work I do with him on a daily basis.
His response was "Well I'm his parent too, and I work with him too". I said "What's his Case Managers name? Who was his best friend at camp? How much did camp cost? What's his swimming teachers name? What were his scores on his end of grade testing? What was his IQ score on his last developmental evaluation? When was his last Doctors appointment? What's his favorite TV show? What's the name of the head of Exceptional Chidrens Programs for the school district?"
He couldn't answer any of these questions. So, he got very defensive and started sputtering.
I told him "You made the choice to walk out when Wyatt was 2. You chose not to attend any of his evaluations, or have any kind of active role in his education until he was 6. You chose not to start learning anything about autism until he was 6, and what you have "learned" is all anecdotal and experimental, and has no basis in science, and no credible research to back it up. I've not only spent the last 7 years researching and applying proven therapies, I've also given 2 lectures to the regular teaching staff at Wyatts school on understanding autism, and how to deal with social and behavioral issues with autistic children in a regular classroom setting."
Apparently he wasn't aware of that.
I also told him that we have a valid custody agreement, with a reasonable visitation schedule, one that I have been more than willing to be flexible with, but there was no way that Wyatt was going to shuttle between his apartment and mine every other week, that it was too much transition and too much inconsistency for him.
He said "Agreements can change Peg". I said "How, with you and your imaginary lawyer that you've been threatening me with for the past year? Because I have a REAL lawyer, so if you and the firm of Tinkerbell, Dumbledore and Frodo would like to face off with a former DA who specializes in family court law, you're more than welcome to do so."
Then he got contrite, saying he only wants what's best for Wyatt, and he's worried that my school schedule is going to impact Wyatt. I told him I've spent the last 6 years arranging my schedule around Wyatts, and that I've managed to meet Wyatts needs, work a part time job and maintain a 3.8 GPA, and that if he's so concerned that Wyatt isn't getting enough attention he should make more of an effort to spend time with him. Told him that he's known for almost 7 years that if he wants to come pick Wyatt up for a few hours, take him to the park or the pool all he has to do is call me, but in the past 7 years he's NEVER done that, so his argument that he's concerned about Wy not getting attention doesn't hold water.
By this point Wy was dressed, so I ended the conversation by telling the Tool that if he has concerns about Wyatt, he is to address them to me in a respectful, polite manner, and we will sit down together and discuss them, but I will NOT tolerate any more snide remarks or condescending attitude from him.
He had no response to that, and tried to hustle Wy out the door, and I stopped him and said "I don't let you leave without having Wy give you a hug and kiss, I expect that you show me the same courtesy, especially in my own home."
Then I kissed my boy, and watched his father walk down the driveway with him, looking thoroughly defeated.
What a LOVELY way to start the day!
Well OK, in a way it is.
The Tool came to pick up Wy for the weekend this morning. Wy slept in, so when Tool got here, Wy was still in his PJ's eating breakfast. I invited him in to sit down, and offered him coffee, which he refused as always, and he stood in the doorway, not looking me in the eye, again as always.
Wy finished his breakfast, and I sent him upstairs to get dressed and told his father " Sit down, We need to have a talk".
I started off by telling him, I know he loves Wy, and that he wants what's best for him, and that I want the same thing too. Then I let him have it - not yelling, not crazed psycho, very calmly and clearly.
I told him that since Tim and I split up, I've seen a change in his attitude towards me, and I don't like it. Told him he's become condescending and rude, and I'm not tolerating it from him. I said that over the last 7 years I've done 90% of the parenting work, and the reason Wyatt functions at the level he does is because of the work I do with him on a daily basis.
His response was "Well I'm his parent too, and I work with him too". I said "What's his Case Managers name? Who was his best friend at camp? How much did camp cost? What's his swimming teachers name? What were his scores on his end of grade testing? What was his IQ score on his last developmental evaluation? When was his last Doctors appointment? What's his favorite TV show? What's the name of the head of Exceptional Chidrens Programs for the school district?"
He couldn't answer any of these questions. So, he got very defensive and started sputtering.
I told him "You made the choice to walk out when Wyatt was 2. You chose not to attend any of his evaluations, or have any kind of active role in his education until he was 6. You chose not to start learning anything about autism until he was 6, and what you have "learned" is all anecdotal and experimental, and has no basis in science, and no credible research to back it up. I've not only spent the last 7 years researching and applying proven therapies, I've also given 2 lectures to the regular teaching staff at Wyatts school on understanding autism, and how to deal with social and behavioral issues with autistic children in a regular classroom setting."
Apparently he wasn't aware of that.
I also told him that we have a valid custody agreement, with a reasonable visitation schedule, one that I have been more than willing to be flexible with, but there was no way that Wyatt was going to shuttle between his apartment and mine every other week, that it was too much transition and too much inconsistency for him.
He said "Agreements can change Peg". I said "How, with you and your imaginary lawyer that you've been threatening me with for the past year? Because I have a REAL lawyer, so if you and the firm of Tinkerbell, Dumbledore and Frodo would like to face off with a former DA who specializes in family court law, you're more than welcome to do so."
Then he got contrite, saying he only wants what's best for Wyatt, and he's worried that my school schedule is going to impact Wyatt. I told him I've spent the last 6 years arranging my schedule around Wyatts, and that I've managed to meet Wyatts needs, work a part time job and maintain a 3.8 GPA, and that if he's so concerned that Wyatt isn't getting enough attention he should make more of an effort to spend time with him. Told him that he's known for almost 7 years that if he wants to come pick Wyatt up for a few hours, take him to the park or the pool all he has to do is call me, but in the past 7 years he's NEVER done that, so his argument that he's concerned about Wy not getting attention doesn't hold water.
By this point Wy was dressed, so I ended the conversation by telling the Tool that if he has concerns about Wyatt, he is to address them to me in a respectful, polite manner, and we will sit down together and discuss them, but I will NOT tolerate any more snide remarks or condescending attitude from him.
He had no response to that, and tried to hustle Wy out the door, and I stopped him and said "I don't let you leave without having Wy give you a hug and kiss, I expect that you show me the same courtesy, especially in my own home."
Then I kissed my boy, and watched his father walk down the driveway with him, looking thoroughly defeated.
What a LOVELY way to start the day!
Another Monday, post work note
I got canceled yet again on Sat morning. At 4:30am. And that was it, I was up for the day. The upside to it was that Wyatt and I got to go to Beckys birthday party, which was lovely. As soon as we got there, Wyatt spotted a cicada, and promptly FREAKED OUT.
Not that I blame him. After having done the 87 Renn Faire, which coincided with the 7 year cicada swarm, I HATE those little fuckers. I have very unpleasant memories of the sound they make when you step on them in leather sandals, it's not pretty. And of how it feels to go sliding across a stage after stepping on one in leather sandals. And the utter freakout of having one fly down the front of a 10lb velvet dress you're wearing in 95 degree heat. Yeah, me and cicadas, not a good combination.
But Wy calmed down, we had a really nice time, headed back to my folks house, and then I went home and tried to get some sleep.
I say tried, because apparently it's a bad idea for me to drink Pepsi after 6pm. I was up until 1am.
But the dreaded 5am phone call never came, I got dressed and went in to work. I was assigned to 7 General, the neurological unit I worked on last weekend, and had one of the same patients I had last week. he in his 50's and has syphilis that's gone to his brain.
That's right kids, to the brain. The same shit that killed Henry VIII.
Of course, nobody would ever confuse this dude with a King of England. This guy was nasty, funky, with cornrows that grew out into mats a good 3 months ago. He'd had a bath the night before, but that funk was just so ground in, his whole room smelled like a hamster cage.
Luckily it was a mellow day, so one of my CNA's and I were able to give Mr Funky ANOTHER bath, we got some vasoline and greased up his hair enough to work out the mats and old cornrows, and them we each took half his head and re-did the rows.
Yes, I know how to cornrow. (Erica's so proud of me right now, because if Tim and I had kids, I wouldn't have been one of those white mothers of a mixed child who had no clue what to do with her daughters hair, so she wouldn't have had to laugh at me behind my back)
By 2pm, I was so wiped out, I ran to the Starbucks on the first floor, and got a White Mocha with double espresso, which perked me right up.
Which of course meant that I had nothing to do for the rest of the day.
I was chasing down every other nurse and CNA on the floor asking if they needed help, and nobody did. I was SO bored I ended up finishing the book I'd started reading the day before.
My shift ended, this time WITHOUT one of my patients coding, and I picked Wy up and headed home. As I was getting him tucked in, I had my hair down, and he started running his fingers through it. I asked if he liked playing with my hair, and he said "I love it. it looks just like the brushers in the Laser Wash 4000 car wash on University Parkway!"
Since car washes, and Goth Belly dancers are the new loves of his life, I took it as a compliment.
I feel asleep almost before my head hit the pillow, and woke up at 2am to Wyatt trying to pry my eyelids open, because he'd woken up, come into my room, put on Bee Movie, crawled into bed with me, and wanted me to watch it with him. Finally got him back to sleep by bribing him with a car wash promise for today (which I kept, because you can go through the car wash in your pajamas)
Not that I blame him. After having done the 87 Renn Faire, which coincided with the 7 year cicada swarm, I HATE those little fuckers. I have very unpleasant memories of the sound they make when you step on them in leather sandals, it's not pretty. And of how it feels to go sliding across a stage after stepping on one in leather sandals. And the utter freakout of having one fly down the front of a 10lb velvet dress you're wearing in 95 degree heat. Yeah, me and cicadas, not a good combination.
But Wy calmed down, we had a really nice time, headed back to my folks house, and then I went home and tried to get some sleep.
I say tried, because apparently it's a bad idea for me to drink Pepsi after 6pm. I was up until 1am.
But the dreaded 5am phone call never came, I got dressed and went in to work. I was assigned to 7 General, the neurological unit I worked on last weekend, and had one of the same patients I had last week. he in his 50's and has syphilis that's gone to his brain.
That's right kids, to the brain. The same shit that killed Henry VIII.
Of course, nobody would ever confuse this dude with a King of England. This guy was nasty, funky, with cornrows that grew out into mats a good 3 months ago. He'd had a bath the night before, but that funk was just so ground in, his whole room smelled like a hamster cage.
Luckily it was a mellow day, so one of my CNA's and I were able to give Mr Funky ANOTHER bath, we got some vasoline and greased up his hair enough to work out the mats and old cornrows, and them we each took half his head and re-did the rows.
Yes, I know how to cornrow. (Erica's so proud of me right now, because if Tim and I had kids, I wouldn't have been one of those white mothers of a mixed child who had no clue what to do with her daughters hair, so she wouldn't have had to laugh at me behind my back)
By 2pm, I was so wiped out, I ran to the Starbucks on the first floor, and got a White Mocha with double espresso, which perked me right up.
Which of course meant that I had nothing to do for the rest of the day.
I was chasing down every other nurse and CNA on the floor asking if they needed help, and nobody did. I was SO bored I ended up finishing the book I'd started reading the day before.
My shift ended, this time WITHOUT one of my patients coding, and I picked Wy up and headed home. As I was getting him tucked in, I had my hair down, and he started running his fingers through it. I asked if he liked playing with my hair, and he said "I love it. it looks just like the brushers in the Laser Wash 4000 car wash on University Parkway!"
Since car washes, and Goth Belly dancers are the new loves of his life, I took it as a compliment.
I feel asleep almost before my head hit the pillow, and woke up at 2am to Wyatt trying to pry my eyelids open, because he'd woken up, come into my room, put on Bee Movie, crawled into bed with me, and wanted me to watch it with him. Finally got him back to sleep by bribing him with a car wash promise for today (which I kept, because you can go through the car wash in your pajamas)
Morning Thoughts
Normally I'm NOT a morning person. Ask Nicole, she remembers me punching her when she tried to wake me up one morning. I of course have no such memory, but, as I said, NOT a morning person. I'm usually not even functional until after 3 cups of coffee.
But, with the new school year, and the summer of insomnia, I've become a morning person out of necessity. And I'm finding that I actually like it.
I have to get Wyatt up for school at 6:15. With him not being a morning person either, this is always a tug of war. The other day he tapped me on the head and told me he was hitting my snooze button so he could sleep for 5 more min. This morning he insisted that we had to snuggle in my bed for 2 min before he went to eat his breakfast. While we were snuggling, he told me he was dreaming about some girl from one of the Nickelodeon shows, and that he wants her to be his girlfriend.
(I see my future - it's going to be filled with chasing away little hoochie mamas that want my beautiful son...)
After our 2 min snuggle, I got Wy downstairs, he got dressed, ate, I made him lunch, and we went out front to wait for the bus. This is becoming my favorite part of the morning. He's such fun to watch. He loves watching the streetlights shut off as it gets lighter out, he likes to tell me the make and model of each car that comes down the street, and he does a little happy dance with each school bus that passes. He always runs back to kiss me before he gets on his bus, and he turns his head and looks back at me and waves as the bus is pulling away.
He's just so full of joy at the simplest things. It's contagious. By watching him, so happy and excited, I can't help but be caught up in it and carry some of that joy forward into my own day.
I can't think of a better way to start the morning.
But, with the new school year, and the summer of insomnia, I've become a morning person out of necessity. And I'm finding that I actually like it.
I have to get Wyatt up for school at 6:15. With him not being a morning person either, this is always a tug of war. The other day he tapped me on the head and told me he was hitting my snooze button so he could sleep for 5 more min. This morning he insisted that we had to snuggle in my bed for 2 min before he went to eat his breakfast. While we were snuggling, he told me he was dreaming about some girl from one of the Nickelodeon shows, and that he wants her to be his girlfriend.
(I see my future - it's going to be filled with chasing away little hoochie mamas that want my beautiful son...)
After our 2 min snuggle, I got Wy downstairs, he got dressed, ate, I made him lunch, and we went out front to wait for the bus. This is becoming my favorite part of the morning. He's such fun to watch. He loves watching the streetlights shut off as it gets lighter out, he likes to tell me the make and model of each car that comes down the street, and he does a little happy dance with each school bus that passes. He always runs back to kiss me before he gets on his bus, and he turns his head and looks back at me and waves as the bus is pulling away.
He's just so full of joy at the simplest things. It's contagious. By watching him, so happy and excited, I can't help but be caught up in it and carry some of that joy forward into my own day.
I can't think of a better way to start the morning.
Wyatt-isms
This being (as you all know by now) Wyatts 9th birthday, I've been thinking all day about things he's done and said over the last 9 years. Things that have tickled me, made me smile, made me tear up, made me think. So, in celebration of my (not so) little boy, he's a few of my favorite Wyat-isms
In kindergarten Wyatt's teacher asked the class "Who can think of a word that starts with C?" Wy popped up, all exited and yelled out "CRAP! That's a good C word!"
One day in pre-school Wyatt didn't want to lay down for nap time. His favorite aide, LaKiesha finally got him to lay down on his mat. After a few minutes, she heard him singing to himself. She listened for a bit, then asked the teacher Donna "Is that little white boy singing Bob Marley?"
He was. He was singing "Get Up, Stand Up", complete with the Peter Tosh portion in the middle, in a perfect little Jamaican accent.
At the last Path Of The Moon kids ritual, Wyatt's job was to stamp bees on everyone's hand. He got to RavenHarts 14 year old son, looked up at him and said "Hey, you're growing a mustache! Are you becoming a man?"
One night as I was tucking Wyatt in, he started playing with my hair. I asked if he liked my hair, and he said "It's beautiful, it looks like the brushers at the Auteck 4000 car wash"
One year for Halloween, we did the trick or treating downtown in Kernersville. They had a magician there named Captain Jack, who had a real wooden leg. He did amazing tricks, but all Wy cared about was the leg. he went up to Captain Jack, patted his leg, and told him it was very pretty. Captain Jack gave Wyatt 2 handfuls of candy.
Wyatt told the guy driving the Ice Cream Truck that he only gets ice cream from Ford trucks.
POTMC Summer Ceilidh, Wyatt fell in love with all of the lovely ladies of Torque Tribal Fusion Belly Dancing. He invited all of them to come to Nana and Grandpa's house with him and told me he wanted to marry them all. But he still says he loves Sashame the best.
2 years ago I took Wyatt to the mall for an afternoon of elevator riding. The Black Theater Festival was taking place, and the mall was packed with people in town for the festival. Wyatt decided that he just HAD to climb into the lap of every older black woman he saw sitting down, and that's exactly what he did. Climbed into their laps, told them how much he liked their braids, laid his head on their ample bosoms and hugged and kissed them. And every one of those women hugged him right back, not one of them asked why this unknown little boy was in their laps.
Whenever my Mom or I wear frosted lipstick Wyatt says "Oh, you have cake lips, let me kiss your yummy cake lips!"
My friend Theresa is staying with us during the week, for school. She walked through the kitchen yesterday, Wy asked where she was going and she said out back. Then she grinned at him and said "Will you miss me?" Wy said "No, you're just going outside"
When Wy was a toddler, every time my sister Tracy would talk to him he'd stick his fingers in his ears. We didn't know at the time that the pitch of her voice was too high for him, poor Tracy just thought he didn't like her!
I had taken Wyatt up to NY with me to pick up his brother John. As we were waiting in line in a rest stop, a very tall truckdriver bent down and started talking to Wy. In a near perfect Robert DeNiro voice Wy said "Are you talking to me? Are you talking...to...me?" (He had just watched Shark Tail and had picked the line up from that - no I did not show my then 4 year old Taxi Driver!)
In kindergarten Wyatt's teacher asked the class "Who can think of a word that starts with C?" Wy popped up, all exited and yelled out "CRAP! That's a good C word!"
One day in pre-school Wyatt didn't want to lay down for nap time. His favorite aide, LaKiesha finally got him to lay down on his mat. After a few minutes, she heard him singing to himself. She listened for a bit, then asked the teacher Donna "Is that little white boy singing Bob Marley?"
He was. He was singing "Get Up, Stand Up", complete with the Peter Tosh portion in the middle, in a perfect little Jamaican accent.
At the last Path Of The Moon kids ritual, Wyatt's job was to stamp bees on everyone's hand. He got to RavenHarts 14 year old son, looked up at him and said "Hey, you're growing a mustache! Are you becoming a man?"
One night as I was tucking Wyatt in, he started playing with my hair. I asked if he liked my hair, and he said "It's beautiful, it looks like the brushers at the Auteck 4000 car wash"
One year for Halloween, we did the trick or treating downtown in Kernersville. They had a magician there named Captain Jack, who had a real wooden leg. He did amazing tricks, but all Wy cared about was the leg. he went up to Captain Jack, patted his leg, and told him it was very pretty. Captain Jack gave Wyatt 2 handfuls of candy.
Wyatt told the guy driving the Ice Cream Truck that he only gets ice cream from Ford trucks.
POTMC Summer Ceilidh, Wyatt fell in love with all of the lovely ladies of Torque Tribal Fusion Belly Dancing. He invited all of them to come to Nana and Grandpa's house with him and told me he wanted to marry them all. But he still says he loves Sashame the best.
2 years ago I took Wyatt to the mall for an afternoon of elevator riding. The Black Theater Festival was taking place, and the mall was packed with people in town for the festival. Wyatt decided that he just HAD to climb into the lap of every older black woman he saw sitting down, and that's exactly what he did. Climbed into their laps, told them how much he liked their braids, laid his head on their ample bosoms and hugged and kissed them. And every one of those women hugged him right back, not one of them asked why this unknown little boy was in their laps.
Whenever my Mom or I wear frosted lipstick Wyatt says "Oh, you have cake lips, let me kiss your yummy cake lips!"
My friend Theresa is staying with us during the week, for school. She walked through the kitchen yesterday, Wy asked where she was going and she said out back. Then she grinned at him and said "Will you miss me?" Wy said "No, you're just going outside"
When Wy was a toddler, every time my sister Tracy would talk to him he'd stick his fingers in his ears. We didn't know at the time that the pitch of her voice was too high for him, poor Tracy just thought he didn't like her!
I had taken Wyatt up to NY with me to pick up his brother John. As we were waiting in line in a rest stop, a very tall truckdriver bent down and started talking to Wy. In a near perfect Robert DeNiro voice Wy said "Are you talking to me? Are you talking...to...me?" (He had just watched Shark Tail and had picked the line up from that - no I did not show my then 4 year old Taxi Driver!)
Not a fun day...
Really, it's pretty much sucked.
Wyatt had school today, and I had clinical, but if you read my status earlier, you know neither one of those things actually happened.
When I got Wy up this morning, he was pretty sluggish. Not out of the ordinary for him, but he was a little more sluggish than usual. I fed him breakfast, got him dressed, and was ready to go out front with him and wait for the bus, when I kissed his forehead, and I noticed that it was a bit warmer than it should be.
I'm usually pretty good at gauging a temp by touch. He felt like he was about 100, and the thermometer confirmed it. His nose was stuffy, he was sneezing, his eyes were puffy and glassy, and I thought "Ah crap".
There have been 2 confirmed cases of H1N1 flu in our area, and the unit I worked on this weekend had another 2 patients on isolation for suspected flu, so I wasn't about to take any chances. I got myslef dressed, popped Wy in the car and headed over to the pediatrician.
By this point it was less than 60 min before I was supposed to be at clinical, so I called my instructor to let her know what was going on, and she told me that since I hadn't followed school policy and notified her more than an hour before clinical I would get an Unsatisfactory for the day, a written warning, and I'd have to make the day up.
Fabulous.
Just what I wanted to hear as I'm driving my (possibly) flu infected child to the MD.
Between the unexpected changes in my work schedule, having a day off Monday, and now not going to school this morning, Wyatt's whole routine has already been turned upside down, and now he knows he's going to the Dr, and he's freaking about about the possibility of maybe having to get a shot, so that's all he talked about the whole way over there.
You know, back when he was 3, and wasn't talking yet, if you'd told me there's ever come a time when I'd tell him to stop talking, I'd have laughed in your face. Well, that time came, and I wasn't laughing!
Fortunately his regular pediatrician happened to be the one doing the walk in visits today, so Wyatt was fine, he gave him a big hug, and Dr A was very sweet and patient with him. Dr A is wonderful, he's been Wyatts' Dr since just after he was diagnosed. He's taken the time to educate himself on autism, he's always very patient with Wyatt, and he does things on Wyatts' time table and doesn't try to rush him through an appointment.
Dr A said he didn't think it was the flu, that it was probably a virus, and then gave both Wyatt and I notes for school. I never thought at 44 I'd need to bring a note in to my teacher, but there it is.
I got Wyatt home, gave him some Motrin and Claritin for the cold, and e-mailed my 3 page paper (the one I was bitching about all day yesterday) to my instructor. She had wanted me to bring it to campus today, but later she changed her mind and said I could e-mail it to her, which I appreciated.
As if all of this mess wasn't stressful enough, Wyatt was a little beastie today. The combination of the day off from school, the holiday Monday, and all the juggling of my work schedule this past weekend just threw his whole world into turmoil, and everything - Ev. Re. Thing. was an argument today.
He had a project due for school tomorrow, a fill in the blank poster all about him, that should have taken 5 min to finish. It turned into a 45 min. battle. He argued about dinner, argued about the shower tonight, argued about bedtime, argued about brushing his hair, argued about getting into bed, argued about getting under the covers,. I swear to GOD I was ready to find a band of Gypsys and sell his little ass off!
The up side, is that most of the arguing was similar to how his brother behaved at that age, so I decided to take the attitude that the change in routine may have triggered it, but the behavior itself was pretty much typical for an almost 9 year old.
To me, any typical, age appropriate behavior, even irritating, aggravating, I know why tigers eat their young behavior, is a positive step in his development, so after I put him to bed and looked over some stuff for MY schooling, I poured myself a glass of wine, and decided to let go of the day. I'm going to get a good sleep, and Wy and I will start fresh in the morning.
Wyatt had school today, and I had clinical, but if you read my status earlier, you know neither one of those things actually happened.
When I got Wy up this morning, he was pretty sluggish. Not out of the ordinary for him, but he was a little more sluggish than usual. I fed him breakfast, got him dressed, and was ready to go out front with him and wait for the bus, when I kissed his forehead, and I noticed that it was a bit warmer than it should be.
I'm usually pretty good at gauging a temp by touch. He felt like he was about 100, and the thermometer confirmed it. His nose was stuffy, he was sneezing, his eyes were puffy and glassy, and I thought "Ah crap".
There have been 2 confirmed cases of H1N1 flu in our area, and the unit I worked on this weekend had another 2 patients on isolation for suspected flu, so I wasn't about to take any chances. I got myslef dressed, popped Wy in the car and headed over to the pediatrician.
By this point it was less than 60 min before I was supposed to be at clinical, so I called my instructor to let her know what was going on, and she told me that since I hadn't followed school policy and notified her more than an hour before clinical I would get an Unsatisfactory for the day, a written warning, and I'd have to make the day up.
Fabulous.
Just what I wanted to hear as I'm driving my (possibly) flu infected child to the MD.
Between the unexpected changes in my work schedule, having a day off Monday, and now not going to school this morning, Wyatt's whole routine has already been turned upside down, and now he knows he's going to the Dr, and he's freaking about about the possibility of maybe having to get a shot, so that's all he talked about the whole way over there.
You know, back when he was 3, and wasn't talking yet, if you'd told me there's ever come a time when I'd tell him to stop talking, I'd have laughed in your face. Well, that time came, and I wasn't laughing!
Fortunately his regular pediatrician happened to be the one doing the walk in visits today, so Wyatt was fine, he gave him a big hug, and Dr A was very sweet and patient with him. Dr A is wonderful, he's been Wyatts' Dr since just after he was diagnosed. He's taken the time to educate himself on autism, he's always very patient with Wyatt, and he does things on Wyatts' time table and doesn't try to rush him through an appointment.
Dr A said he didn't think it was the flu, that it was probably a virus, and then gave both Wyatt and I notes for school. I never thought at 44 I'd need to bring a note in to my teacher, but there it is.
I got Wyatt home, gave him some Motrin and Claritin for the cold, and e-mailed my 3 page paper (the one I was bitching about all day yesterday) to my instructor. She had wanted me to bring it to campus today, but later she changed her mind and said I could e-mail it to her, which I appreciated.
As if all of this mess wasn't stressful enough, Wyatt was a little beastie today. The combination of the day off from school, the holiday Monday, and all the juggling of my work schedule this past weekend just threw his whole world into turmoil, and everything - Ev. Re. Thing. was an argument today.
He had a project due for school tomorrow, a fill in the blank poster all about him, that should have taken 5 min to finish. It turned into a 45 min. battle. He argued about dinner, argued about the shower tonight, argued about bedtime, argued about brushing his hair, argued about getting into bed, argued about getting under the covers,. I swear to GOD I was ready to find a band of Gypsys and sell his little ass off!
The up side, is that most of the arguing was similar to how his brother behaved at that age, so I decided to take the attitude that the change in routine may have triggered it, but the behavior itself was pretty much typical for an almost 9 year old.
To me, any typical, age appropriate behavior, even irritating, aggravating, I know why tigers eat their young behavior, is a positive step in his development, so after I put him to bed and looked over some stuff for MY schooling, I poured myself a glass of wine, and decided to let go of the day. I'm going to get a good sleep, and Wy and I will start fresh in the morning.
Quirky kids are the best!
Wyatt never fails to crack me up.
The ice cream truck just came through our neighborhood, and as soon as Wy heard the music, he reacted like any typical almost 9 year old would. He started yelling "MOM!!! The Ice Cream truck, hurry up, we're going to miss it, c'mon, c'mon!!"
I grabbed my purse, and walked down to the end of the driveway with him to wait for the truck to come around the corner. We flagged it down, and he stopped at the end of our driveway and asked Wyatt kind of ice cream he wanted.
Wyatt looked at the truck and said "Oh, I'm sorry, this is the wrong kind of Ice Cream Truck. I only get Ice Cream from Ford trucks".
I laughed so hard I think I peed a little.
The ice cream truck just came through our neighborhood, and as soon as Wy heard the music, he reacted like any typical almost 9 year old would. He started yelling "MOM!!! The Ice Cream truck, hurry up, we're going to miss it, c'mon, c'mon!!"
I grabbed my purse, and walked down to the end of the driveway with him to wait for the truck to come around the corner. We flagged it down, and he stopped at the end of our driveway and asked Wyatt kind of ice cream he wanted.
Wyatt looked at the truck and said "Oh, I'm sorry, this is the wrong kind of Ice Cream Truck. I only get Ice Cream from Ford trucks".
I laughed so hard I think I peed a little.
Friday, August 21, 2009
Critical Thinking Skills (or the lack therof)
This morning I was doing something I do fairly frequently, combing through blogs related to autism. The blogs that I tend to read are those that are science based, rather than the paranoid, vaccines caused it, hyperbaric O2, special diets, vitamin supplements and experimental treatments du jour cured it. Being a nurse, I want research, I want reproducible, credible, peer reviewed studies.
What I DON'T want is some former Playboy centerfold who has no scientific background feeding me unproven theories that every bit of science available have shown to be false.
Being the parent of an autistic child, I understand full well the kind of desperation that the initial diagnosis can bring on. I know all about being willing to do ANYTHING to help your child, fighting like mad to connect with them, pouring over every bit of information available in the hope that something will leap out as the one answer to the ever present "WHY?".
But as a nurse of over 14 years, and as a pagan of nearly 20 years, I also know that sometimes we don't get that answer. Sometimes, we're not supposed to. Sometimes we have to simply accept that this is how things are, we're not ever going to know why, and we have move forward from the moment that we're in, and do the best we possibly can with what we're given.
I've written on several autism message boards about this. My perspective is that the why isn't as important as the now. I've written that the most important thing that we can do as parents of special needs children is to focus on meeting our childs needs, and helping them reach their highest level of functioning. I've said that sometimes as parents we get so caught up in looking for something to blame for the fact that our children aren't typically developing, that we forget to focus on what our kids CAN do. I've also said that there are many, many unprincipled people who have no qualms about preying on the pain and desperation of parents in order to make money.
I've been soundly trounced for saying these things, which is why I no longer post on autism message boards.
But, since this is MY page, I'm going to say whatever the fuck I want!
SO here goes: Vaccines DO NOT cause autism. The initial culprit that people were blaming was the mercury based preservative thimerisol. The US vaccine supply has been COMPLETELY thimerisol free (with the exception of the flu vaccine) since 2002. Initially the Vaccine Cause Autism crowd believed that autism diagnosis rates would drop once thimerisol was removed from vaccines. That hasn't happened, rates have continued to climb. So, the next target of blame was the MMR vaccine. There have been multiple studies both here and abroad to verify the safety of the MMR vaccine, and it's been proven safe. There is absolutely NO credible, scientific evidence that the MMR causes autism.
Gluten/Cassien free diets have been touted for years as a cure for autism, as well as chelation, hyperbaric O2 therapy, and now stem cell therapy. The G/C diet is nutritionally limited, prohibitively expensive for most families, and has no proof of effectiveness. Hyperbaric O2 and Chelation are both potentially dangerous, in fact the CDC just shut down a study on chelation and autism because of the danger posed to the children whose parents volunteered them to participate. Stem Cell therapy is being done outside the US, in Costa Rica and China (neither one of which would be a first line choice for me in terms of medical care for MY child!), because it's illegal in the US and Europe. Why is it illegal? One of the dangers of stem cell therapy is that the signals in the body that tell the stem cells to differentiate, that trigger them to develop into what's needed by the body are SHUT OFF once the organs develop. So, there's just as much of a chance of undifferentiated stem cells producing lung or liver cells in the elbow as there is of the cells producing what's actually needed by the body.
The thing that so many ASD (autism spectrum disorder) parents seem to forget, in all the stumbling around for the why, and trying to cure their child, is that ALL children do improve over time. To varying degrees, yes, but even the most severely autistic child will be markedly different at 10 than they were at 2. The earlier we as parents intervene, the more time we spend helping our children develop the skills they need to function (communication, self care, fine and gross motor skills), the more progress they'll make further down the line.
And that concludes my rant for the morning.
What I DON'T want is some former Playboy centerfold who has no scientific background feeding me unproven theories that every bit of science available have shown to be false.
Being the parent of an autistic child, I understand full well the kind of desperation that the initial diagnosis can bring on. I know all about being willing to do ANYTHING to help your child, fighting like mad to connect with them, pouring over every bit of information available in the hope that something will leap out as the one answer to the ever present "WHY?".
But as a nurse of over 14 years, and as a pagan of nearly 20 years, I also know that sometimes we don't get that answer. Sometimes, we're not supposed to. Sometimes we have to simply accept that this is how things are, we're not ever going to know why, and we have move forward from the moment that we're in, and do the best we possibly can with what we're given.
I've written on several autism message boards about this. My perspective is that the why isn't as important as the now. I've written that the most important thing that we can do as parents of special needs children is to focus on meeting our childs needs, and helping them reach their highest level of functioning. I've said that sometimes as parents we get so caught up in looking for something to blame for the fact that our children aren't typically developing, that we forget to focus on what our kids CAN do. I've also said that there are many, many unprincipled people who have no qualms about preying on the pain and desperation of parents in order to make money.
I've been soundly trounced for saying these things, which is why I no longer post on autism message boards.
But, since this is MY page, I'm going to say whatever the fuck I want!
SO here goes: Vaccines DO NOT cause autism. The initial culprit that people were blaming was the mercury based preservative thimerisol. The US vaccine supply has been COMPLETELY thimerisol free (with the exception of the flu vaccine) since 2002. Initially the Vaccine Cause Autism crowd believed that autism diagnosis rates would drop once thimerisol was removed from vaccines. That hasn't happened, rates have continued to climb. So, the next target of blame was the MMR vaccine. There have been multiple studies both here and abroad to verify the safety of the MMR vaccine, and it's been proven safe. There is absolutely NO credible, scientific evidence that the MMR causes autism.
Gluten/Cassien free diets have been touted for years as a cure for autism, as well as chelation, hyperbaric O2 therapy, and now stem cell therapy. The G/C diet is nutritionally limited, prohibitively expensive for most families, and has no proof of effectiveness. Hyperbaric O2 and Chelation are both potentially dangerous, in fact the CDC just shut down a study on chelation and autism because of the danger posed to the children whose parents volunteered them to participate. Stem Cell therapy is being done outside the US, in Costa Rica and China (neither one of which would be a first line choice for me in terms of medical care for MY child!), because it's illegal in the US and Europe. Why is it illegal? One of the dangers of stem cell therapy is that the signals in the body that tell the stem cells to differentiate, that trigger them to develop into what's needed by the body are SHUT OFF once the organs develop. So, there's just as much of a chance of undifferentiated stem cells producing lung or liver cells in the elbow as there is of the cells producing what's actually needed by the body.
The thing that so many ASD (autism spectrum disorder) parents seem to forget, in all the stumbling around for the why, and trying to cure their child, is that ALL children do improve over time. To varying degrees, yes, but even the most severely autistic child will be markedly different at 10 than they were at 2. The earlier we as parents intervene, the more time we spend helping our children develop the skills they need to function (communication, self care, fine and gross motor skills), the more progress they'll make further down the line.
And that concludes my rant for the morning.
Thursday, November 29, 2007
Prejudice, Ignorance and Profile Changes
You may have noticed that I changed my Myspace profile. Not just the look of the page, I also changed a few things in the "About me" section. Go ahead, look, I'll wait....
Back now? Good.
I didn't just make these changes because I was bored, or because I wanted to "freshen things up", I was motivated by a couple of things.
I had a very interesting, although upsetting conversation last week with one of my professers. I stopped in to see my Chem lab instructor, and in the course of talking she asked how my son was. She knows Wy's autistic, and we've had conversations about autism before, but never one like this. She was asking about his schooling, what kind of class does he go to, is he in a special school, all that. I told her he attends a specialized autism class in a regular elementary school, that he goes to a regular classroom for art, and that the kids eat in the cafeteria every day. She looked shocked. She told me that it was a bad idea for him to go to a regular school, that "children like him" should be in a school for kids with disabilities, and not around "normal kids". She said that it's not good for "normal kids" to be around "damaged" children, that it will make them "act like they're damaged too". (anything in quotations is a direct quote from her).
I was disgusted. This level of ignorance and prejudice, from someone with a PhD?!?! I was stunned. So much so that initially, I didn't know what to say.
Once I pulled my thoughts together I politely explained to her that Wyatt was not "damaged" his intellegence is intact, he's able to communicate, and he's doing very well in school. I then made an excuse and left. Had she been anyone else, I would have ripped her a new one, but since I still need a passing grade from this cow I had to bite my tongue.
Later that evening I talked to my older son. One of the sororities on his campus was doing a lecture on autism so he decided to go, thinking he might learn something new. Sadly, no.
The lecture consisted of all the standard stereotypes about autism. Autistics can't express feelings, they all rock and handflap, they're not able to communicate, they don't make eye contact and autism is caused by vaccinations. Autistic children (And of course, ALL autistics are children) are victims, helpless, unaware of the world around them, incapable of showing affection, learning, or experiencing joy. When the girls presenting the lecture threw it open to questions, my son proceded to dismantle nearly every point they had presented. He asked them if any of them knew someone with autism, and not one of them did.
He told me not one of the girls from that sorority will talk to him now. He said it's no great loss! God I love that kid.
I'm just so sick and tired of the media presenting autism as this horrible "disease" and "epidemic" that NEEDS TO BE CURED!!!!! MY GOD WE HAVE TO SAVE THESE POOR SAD LOST CHILDREN!!!!
Please, shut the fuck up.
My son is not lost, he's not a victim and he's actually a very happy kid. He knows that he's different, but he also knows that he's loved and accepted for exactly who he is. There have been times when I've told people he's autistic, and they respond with "Oh the poor thing" Oh bless his little heart" Oh that's so sad".
Bitch, I'll cut you.
I don't tell people he's autistic so he'll be pitied, I do it so he'll be accepted, so people will understand that he's he's not a brat, he's not hyper and he doesn't "need a spanking". I tell people so they'll understand that there's a reason he responds to questions with quotes from movies, so they'll know that he can't always make eye contact because it's too overwhelming for him. I do it so people will learn, so they'll see that autism is not the end of the world, it's just a different way of experiencing it.
Despite all the sobbing mothers paraded out by Oprah and Autism Speaks, not every parent of an autistic child is sitting at home thinking their life is a living hell. Not all of us are subjecting our children to experimental treatments, psychotropic medication and intensive, sometimes torturous therapies in the hopes that they'll become "normal", that they'll be "cured". Many of us are doing everything we can to help our children learn and function, WITHOUT trying to change who they are, or trying to force their square brain into the round hole of neurotypical function.
Many of us love our autistic children exactly as they are.
So get over it already.
Back now? Good.
I didn't just make these changes because I was bored, or because I wanted to "freshen things up", I was motivated by a couple of things.
I had a very interesting, although upsetting conversation last week with one of my professers. I stopped in to see my Chem lab instructor, and in the course of talking she asked how my son was. She knows Wy's autistic, and we've had conversations about autism before, but never one like this. She was asking about his schooling, what kind of class does he go to, is he in a special school, all that. I told her he attends a specialized autism class in a regular elementary school, that he goes to a regular classroom for art, and that the kids eat in the cafeteria every day. She looked shocked. She told me that it was a bad idea for him to go to a regular school, that "children like him" should be in a school for kids with disabilities, and not around "normal kids". She said that it's not good for "normal kids" to be around "damaged" children, that it will make them "act like they're damaged too". (anything in quotations is a direct quote from her).
I was disgusted. This level of ignorance and prejudice, from someone with a PhD?!?! I was stunned. So much so that initially, I didn't know what to say.
Once I pulled my thoughts together I politely explained to her that Wyatt was not "damaged" his intellegence is intact, he's able to communicate, and he's doing very well in school. I then made an excuse and left. Had she been anyone else, I would have ripped her a new one, but since I still need a passing grade from this cow I had to bite my tongue.
Later that evening I talked to my older son. One of the sororities on his campus was doing a lecture on autism so he decided to go, thinking he might learn something new. Sadly, no.
The lecture consisted of all the standard stereotypes about autism. Autistics can't express feelings, they all rock and handflap, they're not able to communicate, they don't make eye contact and autism is caused by vaccinations. Autistic children (And of course, ALL autistics are children) are victims, helpless, unaware of the world around them, incapable of showing affection, learning, or experiencing joy. When the girls presenting the lecture threw it open to questions, my son proceded to dismantle nearly every point they had presented. He asked them if any of them knew someone with autism, and not one of them did.
He told me not one of the girls from that sorority will talk to him now. He said it's no great loss! God I love that kid.
I'm just so sick and tired of the media presenting autism as this horrible "disease" and "epidemic" that NEEDS TO BE CURED!!!!! MY GOD WE HAVE TO SAVE THESE POOR SAD LOST CHILDREN!!!!
Please, shut the fuck up.
My son is not lost, he's not a victim and he's actually a very happy kid. He knows that he's different, but he also knows that he's loved and accepted for exactly who he is. There have been times when I've told people he's autistic, and they respond with "Oh the poor thing" Oh bless his little heart" Oh that's so sad".
Bitch, I'll cut you.
I don't tell people he's autistic so he'll be pitied, I do it so he'll be accepted, so people will understand that he's he's not a brat, he's not hyper and he doesn't "need a spanking". I tell people so they'll understand that there's a reason he responds to questions with quotes from movies, so they'll know that he can't always make eye contact because it's too overwhelming for him. I do it so people will learn, so they'll see that autism is not the end of the world, it's just a different way of experiencing it.
Despite all the sobbing mothers paraded out by Oprah and Autism Speaks, not every parent of an autistic child is sitting at home thinking their life is a living hell. Not all of us are subjecting our children to experimental treatments, psychotropic medication and intensive, sometimes torturous therapies in the hopes that they'll become "normal", that they'll be "cured". Many of us are doing everything we can to help our children learn and function, WITHOUT trying to change who they are, or trying to force their square brain into the round hole of neurotypical function.
Many of us love our autistic children exactly as they are.
So get over it already.
Saturday, June 30, 2007
THe scarier side of parenting.
My son is a truly amazing child. Many children with autism are socially withdrawn, and unable to connect with people in a recognizable way. My son is the polar opposite. He's friendly, sweet, and loving, and incredibly innocent. Wy thinks the whole world is his friend. He has no fear of strangers, he'll walk up to anyone and start talking to them, no matter how friendly, or scary the person might be. Wy doesn't judge. It's a wonderful quality, one I don't want him to lose, but it's also a potentially dangerous thing.
I was on the phone the other day, trying to get a problem with my computer solved when the doorbell rang. By the time I got to the living room (Which wasn't long, my house is pretty tiny) Wy had the front door open, and was inviting the particularly scary looking man at it into the house. The guy had about 4 days worth of stubble, was wearing dirty clothes, had a bandanna around his head and just looked "off".
He also had his foot in the door, ready to walk into the house.
I immediately went into Mama Bear mode, put myself between the guy and Wyatt, and closed the screen door in his face and locked it. Hung up the phone and asked the guy what he wanted. Not a nice "What can I do for you" a full blown, in your face, "What do you want?!"
He launched into the whole convoluted story about how he lives in Virgina, but he's origionally from Winston, he's visiting family, he knows a lady up the street, you can ask, she knows him, and his truck broke down and...
That was all I needed to hear. See, I grew up on Long Island, and lived in NYC for a while. I've heard almost every variation on this story imaginable. It's always the same - My purse was stolen, I lost my train ticket, I left my wallet in a cab, I don't know anyone in the area, I got mugged on the subway, - and it always ends with - can you just give me 5, 10, 20 dollars - whatever the going rate of a crack rock is at the moment.
I cut the cock and bull story short, stuck my hand in the guys face and said "Just get to the point".
"Could you give me 20 dollars, that's all I need to get my truck back".
I told him "NO" and shut the door in his face, locked it, locked the back door and called the police.
Then I had to sit Wyatt down and talk to him about opening the door. I didn't even bother to tell him not to open the door to strangers, because as I said, the whole world is his friend. I just told him he's never allowed to open the door. When the police officer came I gave him a description of the guy, and had him talk to Wyatt about not opening the door. Tim talked to him, and his father did as well, but I don't know if it really took.
I'm going out tomorrow and getting a chain lock for the front and back doors, one that I can put up at my eye level so Wy can't reach it. This way, he CAN'T open the door.
It's this type of thing that's kept me from enrolling him in a summer day camp at the local rec. center. The camper to staff ratio is just too low for me to feel that he'd be safe. I'd love to enroll him in a camp for autistic children, but those camps run about $1000.00 for a week, and they only give out a few scholarships each year.
It just scared the living shit out of me. What if the guy had gotten all the way in the house? Crackheads are capable of ANYTHING, even hurting a child. I live in a decent neighborhood, but the area around me isn't so great. This is the first time I've ever had anything like this happen, and hopefully it'll be the last.
I swear, if it ever happens again, I'm going to start answering the door with a sword in my hands. I'm not kidding, John has 4 of them in his room, I'm going to start keeping one in the living room closet!
I'm telling you, Wes Craven and Steven King have nothing on my kid, he can scare me worse than anyone on the planet!
I was on the phone the other day, trying to get a problem with my computer solved when the doorbell rang. By the time I got to the living room (Which wasn't long, my house is pretty tiny) Wy had the front door open, and was inviting the particularly scary looking man at it into the house. The guy had about 4 days worth of stubble, was wearing dirty clothes, had a bandanna around his head and just looked "off".
He also had his foot in the door, ready to walk into the house.
I immediately went into Mama Bear mode, put myself between the guy and Wyatt, and closed the screen door in his face and locked it. Hung up the phone and asked the guy what he wanted. Not a nice "What can I do for you" a full blown, in your face, "What do you want?!"
He launched into the whole convoluted story about how he lives in Virgina, but he's origionally from Winston, he's visiting family, he knows a lady up the street, you can ask, she knows him, and his truck broke down and...
That was all I needed to hear. See, I grew up on Long Island, and lived in NYC for a while. I've heard almost every variation on this story imaginable. It's always the same - My purse was stolen, I lost my train ticket, I left my wallet in a cab, I don't know anyone in the area, I got mugged on the subway, - and it always ends with - can you just give me 5, 10, 20 dollars - whatever the going rate of a crack rock is at the moment.
I cut the cock and bull story short, stuck my hand in the guys face and said "Just get to the point".
"Could you give me 20 dollars, that's all I need to get my truck back".
I told him "NO" and shut the door in his face, locked it, locked the back door and called the police.
Then I had to sit Wyatt down and talk to him about opening the door. I didn't even bother to tell him not to open the door to strangers, because as I said, the whole world is his friend. I just told him he's never allowed to open the door. When the police officer came I gave him a description of the guy, and had him talk to Wyatt about not opening the door. Tim talked to him, and his father did as well, but I don't know if it really took.
I'm going out tomorrow and getting a chain lock for the front and back doors, one that I can put up at my eye level so Wy can't reach it. This way, he CAN'T open the door.
It's this type of thing that's kept me from enrolling him in a summer day camp at the local rec. center. The camper to staff ratio is just too low for me to feel that he'd be safe. I'd love to enroll him in a camp for autistic children, but those camps run about $1000.00 for a week, and they only give out a few scholarships each year.
It just scared the living shit out of me. What if the guy had gotten all the way in the house? Crackheads are capable of ANYTHING, even hurting a child. I live in a decent neighborhood, but the area around me isn't so great. This is the first time I've ever had anything like this happen, and hopefully it'll be the last.
I swear, if it ever happens again, I'm going to start answering the door with a sword in my hands. I'm not kidding, John has 4 of them in his room, I'm going to start keeping one in the living room closet!
I'm telling you, Wes Craven and Steven King have nothing on my kid, he can scare me worse than anyone on the planet!
Friday, May 18, 2007
Adventures in Autism, Continued...
You all know that I've had some major ups and downs this past year, related to Wyatts school, and dealing with his autism. I've been under a lot of stress dealing with his teachers, making changes to his Individual Education Plan, struggling to find him the services he needs to function at the highest level he can. It's a constant battle, and sometimes it's exhausting. Sometimes dealing with raising a child with a disability can cloud my vision, and make me lose sight of what's really important, and that is the incredible joy this little boy brings to me every day. There are still major issues that need to be worked on with him, in terms of his education, but I'm not going to talk about those today.
Today, I'm choosing to focus on what makes Wy so unique, and so special. Wy looks at the world in a totally different way than you or I do. Things that we don't think twice about, things that are mundane and ordinary to us are endlessly fascinating, and magical to him.
Automatic doors, for example. I never used to think twice about walking into a grocery store, but when Wy's with me, just passing through the door becomes an adventure. It's new to him every time. We stand outside the door, and he runs up to it, and when it opens, he laughs and jumps up and down in pure 6 year old delight. Then he wants to wait for it to close and do it again, so we do! People walk past and stare, some try to be helpful and encourage him to go in, but Wy's working on his own timetable, so I politely thank them, and let him move at his pace.
Exits on the highway are another source of delight for him. He loves to watch the numbers go up or down, and anticipates each one, telling me which exit is coming up, and if we're getting off at Nana's exit, or Daddys, or the exit for the mall. To me, exits are an indication of where I'm going, to Wy, they're a source of order and structure in what can be a chaotic and confusing world for him.
Music is another of Wy's great loves. If you've ever called my house and gotten the answering machine, you've heard him singing. What amazes me, is that he's got an incredible sense of pitch. If he's singing along with something and the song is too low for him, he'll jump up an octave, but still stay in tune! I've never known a 6 year old to do that, I find that amazing. His brother John and his cousins Nikkie and Stevie all play guitar, and Wy loves to be around them when they're playing, it gives him so much joy. Somewhere along the way, Wyatt decided that my mother plays the banjo (which, if you've ever met my mother is REALLY funny). Every time we go to my parents house, Wy asks Nana to get her banjo and play. We've tried to tell him Nana doesn't have a banjo, but that's his reality, and he's sticking to it!
Wy has more fun riding the garden cart down the hill in my parents backyard than most kids have at an entire amusement park. To him, Cheese Doodles are mana from heaven, Apple juice is the necter of the Gods, trains were put on this earth for his enjoyment, and Salem, our cat, is his best friend ever. A rainy day is the perfect time to go outside and dance, lightning and fireworks are both equally exciting, and elevators are the best thing in the mall.
At this point in my life, it would be so easy to get caught up in the material, and the mundane, to fixate on things that ultimately are unimportant. Having Wy keeps me from doing that. Wy reminds me every day that what is most precious, most important, are the small moments, the inbetween spaces in our lives, where true connection takes place. For me, Wy IS that connection, and I try to carry what I learn from him into the rest of my life, the rest of my relationships. It's not always easy, but ultimately, it's worth it, for him, and for me.
Today, I'm choosing to focus on what makes Wy so unique, and so special. Wy looks at the world in a totally different way than you or I do. Things that we don't think twice about, things that are mundane and ordinary to us are endlessly fascinating, and magical to him.
Automatic doors, for example. I never used to think twice about walking into a grocery store, but when Wy's with me, just passing through the door becomes an adventure. It's new to him every time. We stand outside the door, and he runs up to it, and when it opens, he laughs and jumps up and down in pure 6 year old delight. Then he wants to wait for it to close and do it again, so we do! People walk past and stare, some try to be helpful and encourage him to go in, but Wy's working on his own timetable, so I politely thank them, and let him move at his pace.
Exits on the highway are another source of delight for him. He loves to watch the numbers go up or down, and anticipates each one, telling me which exit is coming up, and if we're getting off at Nana's exit, or Daddys, or the exit for the mall. To me, exits are an indication of where I'm going, to Wy, they're a source of order and structure in what can be a chaotic and confusing world for him.
Music is another of Wy's great loves. If you've ever called my house and gotten the answering machine, you've heard him singing. What amazes me, is that he's got an incredible sense of pitch. If he's singing along with something and the song is too low for him, he'll jump up an octave, but still stay in tune! I've never known a 6 year old to do that, I find that amazing. His brother John and his cousins Nikkie and Stevie all play guitar, and Wy loves to be around them when they're playing, it gives him so much joy. Somewhere along the way, Wyatt decided that my mother plays the banjo (which, if you've ever met my mother is REALLY funny). Every time we go to my parents house, Wy asks Nana to get her banjo and play. We've tried to tell him Nana doesn't have a banjo, but that's his reality, and he's sticking to it!
Wy has more fun riding the garden cart down the hill in my parents backyard than most kids have at an entire amusement park. To him, Cheese Doodles are mana from heaven, Apple juice is the necter of the Gods, trains were put on this earth for his enjoyment, and Salem, our cat, is his best friend ever. A rainy day is the perfect time to go outside and dance, lightning and fireworks are both equally exciting, and elevators are the best thing in the mall.
At this point in my life, it would be so easy to get caught up in the material, and the mundane, to fixate on things that ultimately are unimportant. Having Wy keeps me from doing that. Wy reminds me every day that what is most precious, most important, are the small moments, the inbetween spaces in our lives, where true connection takes place. For me, Wy IS that connection, and I try to carry what I learn from him into the rest of my life, the rest of my relationships. It's not always easy, but ultimately, it's worth it, for him, and for me.
Secret Places
This is one of the first blogs I ever wrote about my son's autism. At the time, I felt a little strange writing about it, but lately I've come to realize that writing about my experiences with him helps me to keep things in perspective, so I've decided to re-post this here.
I don't usually write about Wyatts autism, mainly because it's such a part of my day to day life that I don't really see it as being unusual anymore, but also because I'm not big on the ...I have a child with a disability, feel sorry for me...vibe that I see with a lot of other parents. Every so often though, something comes across my path that gives me some insight into how his mind works, and the unique way that he perceives the world. I receive the Autism Society Of America's magazine Autism Advocate, and I got my new issue today. There was a fascinating essay in the back, that was written by a 13 year old boy with autism. His name is Daniel, he's in 6th grade, and he is non-verbal. The essay is called "The Special Place In Me", and describes the world inside his mind that he escapes to. I'm going to quote some of it here.
I am autistic, and it seems to be easier for kids with autism to go to a secret place in their minds than for other kids. I may not understand everything about that, but it seems that kids like me might stay in their secret place forever, if someone didn't find a way to get them out.When I was little I spent most of my time in my secret hideaway. I did not really know that there was anything that could be better than spending time alone, and I didn't realize that it could be a bad thing.It was only when I got older, and had someone that made me come out of my secret place more and more, that I started to see that going there so much could cause problems. When you are in your autistic hideaway, it can be really hard to escape on your own.I could get stuck in there all the time, by myself if someone did not force their way in to get me out. We read a story in school once about sea sirens that used to lure ships into danger with their beautiful songs. The secret place in my mind is like that. It will lure me there, and then try to keep me trapped in a place very far away
I'm amazed at this boys sense of self awareness, since on the surface, the assumption would be that since he cannot speak, he has no sense of self. I recognize Wyatt in this boy. As a toddler, it seemed that he lived in his own world, and that occasionally he would let me in, but only for short periods. He was aware of me, he would seek me out for comfort or reassurance, but he would just as often ignore me. I would attempt to interact with him, and sometimes he would connect, but more often, he would avoid eye contact. For a long time I thought it was me, that maybe we hadn't bonded, but I know now that this wasn't the case. It was that he was lost in his head, and that it took the past few years of really intensive attention to bring him out of that world. I still see him sinking into it from time to time, even around other children. His way of interacting is to recite lines from cartoons or DVD's in response to conversation, and I have to constantly repeat what other people have said to him, and then prompt him for an appropriate answer. I'm sure that parents of typically developing children must think I'm an overbearing mother (I've heard snotty comments behind my back from some of the mothers in his swimming class), but honestly, I really don't care what other people think. They can't understand unless they have a child like Wy. My biggest concern with him is keeping him connected to the world around him, and not losing him to the secret place inside his head.
I don't usually write about Wyatts autism, mainly because it's such a part of my day to day life that I don't really see it as being unusual anymore, but also because I'm not big on the ...I have a child with a disability, feel sorry for me...vibe that I see with a lot of other parents. Every so often though, something comes across my path that gives me some insight into how his mind works, and the unique way that he perceives the world. I receive the Autism Society Of America's magazine Autism Advocate, and I got my new issue today. There was a fascinating essay in the back, that was written by a 13 year old boy with autism. His name is Daniel, he's in 6th grade, and he is non-verbal. The essay is called "The Special Place In Me", and describes the world inside his mind that he escapes to. I'm going to quote some of it here.
I am autistic, and it seems to be easier for kids with autism to go to a secret place in their minds than for other kids. I may not understand everything about that, but it seems that kids like me might stay in their secret place forever, if someone didn't find a way to get them out.When I was little I spent most of my time in my secret hideaway. I did not really know that there was anything that could be better than spending time alone, and I didn't realize that it could be a bad thing.It was only when I got older, and had someone that made me come out of my secret place more and more, that I started to see that going there so much could cause problems. When you are in your autistic hideaway, it can be really hard to escape on your own.I could get stuck in there all the time, by myself if someone did not force their way in to get me out. We read a story in school once about sea sirens that used to lure ships into danger with their beautiful songs. The secret place in my mind is like that. It will lure me there, and then try to keep me trapped in a place very far away
I'm amazed at this boys sense of self awareness, since on the surface, the assumption would be that since he cannot speak, he has no sense of self. I recognize Wyatt in this boy. As a toddler, it seemed that he lived in his own world, and that occasionally he would let me in, but only for short periods. He was aware of me, he would seek me out for comfort or reassurance, but he would just as often ignore me. I would attempt to interact with him, and sometimes he would connect, but more often, he would avoid eye contact. For a long time I thought it was me, that maybe we hadn't bonded, but I know now that this wasn't the case. It was that he was lost in his head, and that it took the past few years of really intensive attention to bring him out of that world. I still see him sinking into it from time to time, even around other children. His way of interacting is to recite lines from cartoons or DVD's in response to conversation, and I have to constantly repeat what other people have said to him, and then prompt him for an appropriate answer. I'm sure that parents of typically developing children must think I'm an overbearing mother (I've heard snotty comments behind my back from some of the mothers in his swimming class), but honestly, I really don't care what other people think. They can't understand unless they have a child like Wy. My biggest concern with him is keeping him connected to the world around him, and not losing him to the secret place inside his head.
Trick Or Treating With Autism
Parenting a child with autism is always an adventure, it's kind of like riding a roller coaster with a blindfold on. You can't anticipate the ups, downs or twists, so you have to just go with it. The town my parents live in has a really cute, quaint little downtown area, lots of old buildings, with little storefront shops, and every year for Halloween they shut down the streets, the merchants all dress up in costume and give out candy. They have firetrucks and police cars out for the kids to look at, music, a magician, and it's a nice safe place to trick of treat. I've taken Wy there every year and he loves it. But not for the reasons you'd think. See, kids with autism have their own unique way of looking at the world. What you or I would think is really cool doesn't interest them, but the things we'd ignore fascinate them. Like the magician. His name was Captain Jack, he was dressed up as a pirate, complete with wooden leg (He'd lost his leg in a motorcycle accident) He was terrific, did some amazing tricks that Wy couldn't have cared less about. Wy was really into the wooden leg! Wy went up to him, and started patting his wooden leg, and hugged him and told him he had a very pretty leg, which cracked Captain Jack up, and earned Wy a fistfull of candy. Then there was the traffic light at the 4 way intersection. Wy spent 15 min just jumping up and down, laughing and dancing every time the light changed. It was really sweet how happy that light made him. A very nice police officer came over, and was trying to get Wy to go get some more candy, and Wy sucked him into watching the lights too, they were holding hands and jumping up and down together, it was hilarious. There were a couple of merchants there that dress up as Darth Vader, Boba Fet and Stormtroopers every year, and Wy was fascinated with their costumes. he went up to one of the stormtroopers and was stroking the plastic on his arms and then he touched the crotch on the costume. I've never seen a grown man jump back so fast in my life! Honestly, I thought I was going to pee my pants I was laughing so hard.I told the poor guy it was ok, Wy's got no concept of personal space, and Wy gave him a big hug. That's the thing about Wy, he's just really lovable. There's something really wide eyed, innocent, and magical about him that brings out the protective side of people.
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