How much more aware do I have to be? I was no less aware in March of my son's autism or autism in general. However, April kicks off Autism Awareness Month so I got to turn up my autism awareness to 11 apparently. Can I slack off a bit come May? That would be nice. Mother's Day and all.
Pardon me for this jaded sounding post. I mean, really, how can I not put on my Autism Awareness in it's "Rah Rah! Go Team Flappy Quirky" cheerleader face? Isn't part of the reason I write this blog for awareness? How rude!
Here's there thing, I am so aware of autism. I am very much aware of it when my kiddo wakes me up 4 AM to remind me anxiously he would like to vacuum on Saturday.
I am beyond aware of it when my kiddo starts pacing nervously around the house when I have to inform him of a sudden schedule change because a therapist canceled.
I find myself rolling my eyes with awareness when I get an email from my
kiddo's school PTA asking me to make sure my son wears blue on World
Autism Day on April 2nd. Cause you know, he's not really representing
how much he supports autism by just being autistic or whatnot. If you asked him what shirt everyone should wear for autism, he'd
tell ya Tye dye hippie shirts. He's got quite a collection. Keep on
truckin'!
My wallet is keenly aware of it when I bring in the mail and I see a stack of bills from credit cards we have used to pay for said above therapy. Plus, the irony of seeing some fundraising letter from the folks of Autism Speaks mixed in there with them. I think in the beginning we raised money and sent them some of our hard earned dollars. Now I toss it in the garbage. Hey Autism Speaks, I think you got enough from us. How about some of it back? How about not asking the very people who kind of need it more than you? How about not designing a new puzzle piece pin to give to celebrities who will wear it only one day and then probably forget about it? Here's your fundraiser for next year. Don't waste the postage you paid to send this to my house. I bet other families would probably join me on this. You'll save so much money!
I'm very aware of it with each passing birthday of his. I am aware of it when it keeps me up at nights worrying about his future. I am reminded how much more awareness is needed each time some someone sends me a private message to the companion facebook page to this blog and it's clear their school just doesn't get it at all. I am made aware of it every time I have to awkwardly explain and apologize to someone we meet in public why my son tried to take their keys because he had the compulsive need to read the logo for the kind of car they drive on them.
I am aware I just want autism acceptance. I just want the world to be well past being on a first name basis of autism I want them to just get it. To just be like "Oh autistic, okay, what I can to make this work for ya?" Make it a case of no big thing and yadda, yadda, yadda.
Time to wrap this up. I'm very much aware I need to get to the supermarket. My kiddo is very aware that we are running low on french fries. That's a bigger priority in this house than a blue light bulb.
Wednesday, April 2, 2014
Tuesday, March 25, 2014
It's Complicated.
"When did you first suspect he had autism?"
I get asked this a lot. I don't have an exact answer other than "It's complicated."
I think back to those completely sleep deprived days of new motherhood (Which is different than the sleep deprivation I have now. Back then I thought it eventually he would sleep through the night. The good old days) I cannot for the life of me really pinpoint a moment of "What if he has autism?" I just have these memories now that resurface and it's a moment of flappy clarity. It's still so confusing.
His toddler playgroup. This is where it should of slapped me upside the head with some serious red flags right? Nope. Kiddo was a little older than most of the tots in there. He was already running NOT walking by 8 months and into ALL THE THINGS!!! One of the other moms used to joke how he was in "The Accelerated Program" while her kid just chilled like Buddha on her lap. The Kiddo was fiercely independent from the get go. He just looked at those kids just sitting still and was like "I'm out!". ZOOM! Off he would go and off I would run after him through the kind hostess' house that week. One that would not have been baby proofed to the level we were at yet. The other moms would get a chance to catch up on adult conversation and I would pray to God that he wouldn't break something that week.
Of course eventually all these kids that didn't walk as quickly as he did started toddling. The playing field leveled out a bit and I could go to houses knowing gates were up, Breakables were put out of reach. It got a little easier but then dammit wouldn't you know it those kids started talking. All the sudden words like "Duck" and "Mama!" were yelled out all the time. Kiddo started doing that too. A little later and not as much but he did them. Plus all the nice mommies in the group all echoed that wonderful catch phrase "Early walker, late talker!" See? Not a thing to worry about. It's totally cool. Don't mind me as I clean up the two hundred diaper wipes my son managed to pull out of the box and scattered around your kid's room while your kids actually want to play together, side by side. Keep talking! I'm listening! Oh you're pregnant again? Great!!! (In my head I am screaming "Are they crazy??? They want MORE of this???")
I think back to that last Christmas before we started down the autism road. My husband had set up the tree in our family room while I had the kiddo upstairs doing the dinner, bubble bath and fresh pajamas thing. He turned off all the lights except the tree and told me to bring Kiddo down the steps. I held his hand on the steps as we climbed down one by one. I counted each step out loud to encourage him and he echoed some kind of a hum talk pattern back to me. I remember him in his pale blue fleece footie pajamas toddling up the tree. His eyes were wide and a big smile on his face. He was so happy and decided he needed to add to our tree. Thus started a holiday season of whatever was missing in the house, go look on the tree. TV remote? On the tree. Where did my bookmark go? On the tree. Dimmer switch to lights downstairs? Yep, you guessed it. On the tree. Everyone thought "Oh my gosh! That's so cute! He's helping decorate it!" Now I think maybe he was just thinking "Oh we put stuff on the tree. OK, let me go get some stuff for it." Literal thinking is his way.
So yeah, it's complicated. I have a thousand memories that come back and I think to myself,"Why didn't I know? Why didn't we start this sooner?" It just seemed there was always someone around that made me think it was okay and not worry. I don't blame them. I don't blame me. It just what happened. I can't change the past. It's just a complicated one.
I get asked this a lot. I don't have an exact answer other than "It's complicated."
I think back to those completely sleep deprived days of new motherhood (Which is different than the sleep deprivation I have now. Back then I thought it eventually he would sleep through the night. The good old days) I cannot for the life of me really pinpoint a moment of "What if he has autism?" I just have these memories now that resurface and it's a moment of flappy clarity. It's still so confusing.
His toddler playgroup. This is where it should of slapped me upside the head with some serious red flags right? Nope. Kiddo was a little older than most of the tots in there. He was already running NOT walking by 8 months and into ALL THE THINGS!!! One of the other moms used to joke how he was in "The Accelerated Program" while her kid just chilled like Buddha on her lap. The Kiddo was fiercely independent from the get go. He just looked at those kids just sitting still and was like "I'm out!". ZOOM! Off he would go and off I would run after him through the kind hostess' house that week. One that would not have been baby proofed to the level we were at yet. The other moms would get a chance to catch up on adult conversation and I would pray to God that he wouldn't break something that week.
Of course eventually all these kids that didn't walk as quickly as he did started toddling. The playing field leveled out a bit and I could go to houses knowing gates were up, Breakables were put out of reach. It got a little easier but then dammit wouldn't you know it those kids started talking. All the sudden words like "Duck" and "Mama!" were yelled out all the time. Kiddo started doing that too. A little later and not as much but he did them. Plus all the nice mommies in the group all echoed that wonderful catch phrase "Early walker, late talker!" See? Not a thing to worry about. It's totally cool. Don't mind me as I clean up the two hundred diaper wipes my son managed to pull out of the box and scattered around your kid's room while your kids actually want to play together, side by side. Keep talking! I'm listening! Oh you're pregnant again? Great!!! (In my head I am screaming "Are they crazy??? They want MORE of this???")
I think back to that last Christmas before we started down the autism road. My husband had set up the tree in our family room while I had the kiddo upstairs doing the dinner, bubble bath and fresh pajamas thing. He turned off all the lights except the tree and told me to bring Kiddo down the steps. I held his hand on the steps as we climbed down one by one. I counted each step out loud to encourage him and he echoed some kind of a hum talk pattern back to me. I remember him in his pale blue fleece footie pajamas toddling up the tree. His eyes were wide and a big smile on his face. He was so happy and decided he needed to add to our tree. Thus started a holiday season of whatever was missing in the house, go look on the tree. TV remote? On the tree. Where did my bookmark go? On the tree. Dimmer switch to lights downstairs? Yep, you guessed it. On the tree. Everyone thought "Oh my gosh! That's so cute! He's helping decorate it!" Now I think maybe he was just thinking "Oh we put stuff on the tree. OK, let me go get some stuff for it." Literal thinking is his way.
So yeah, it's complicated. I have a thousand memories that come back and I think to myself,"Why didn't I know? Why didn't we start this sooner?" It just seemed there was always someone around that made me think it was okay and not worry. I don't blame them. I don't blame me. It just what happened. I can't change the past. It's just a complicated one.
Tuesday, March 18, 2014
"Situationly"
You know, it's really funny how many folks that read this blog think I have come to terms with my son's autism diagnosis. How at peace I am with it. I have to let you all in on a little secret I've been keeping. Depending on the day, HELL, depending on the hour, I'm not.
The other day I was having a virtual chin wag with some other autism moms and dads I know. It would safe to say we all came from very different backgrounds and all of us had very different kids. So it wasn't surprising that some of us were "Tote McGoats" with ye olde autism and some of us were all "It sucks." I had a moment where I wasn't even sure what my current feelings were other than "It depends on the situation. It can "situationly suck". (Yes, I'm aware that "situationly" isn't a word. What can I say? I'm a visionary.). Hear me out before you come at me with your perky pitchforks and torches of why autism is fantastic. I know it is too.
My son has two parents who have a different neurological make up. Two parents who's communication is completely foreign to his own. He is stuck with two people responsible for his well being that still aren't fluent in his language, "Kiddoense", as I call it. Every interaction, every exchange, and every conversation can be both stressful and enlightening to both of us. I would venture to guess he's having just as many "Oh. So that's what they meant!" moments as we do. Tons of information being processed at all times. Busy even while at rest. That's when it can suck a little.
I have missed so many signs of impending illness and or anxiety inducing situations simply because he can't tell me off the bat, "Ma, I don't feel good." or "I'm scared". That more than sucks, that breaks my heart. Time and time again I will be cursing myself about how I didn't notice the signs as I'm cleaning up his puke or trying to soothe him when he is upset. He can tell me the number of a hotel room we stayed three years ago on a vacation but can't tell me that his ears are hurting him when he has an infection. That blows. As a mom, my instinct is cuddle and wrap my arms around him to comfort him when he is frightened but with his sensory issues being what they are, it is the last thing he needs or wants. I won't lie. That is so freaking hard for me. I know that's my issue and I have to deal with it. It's just not the type of mothering I thought I would be doing. All these years later, still not used to it. It sucks for him that he still has to remind me what he needs or can handle.
My son has amazed me with how he views the world. It's opened doorways I didn't even know were there. He didn't just knock politely on those doors either. He slammed them open like that TV character "Kramer" on Seinfeld. Jarring as that is, it's been awesome. Eye and mind opening. I appreciate his patience with me because sometimes I didn't feel like walking through those doorways. He dragged me in kicking and screaming. Once I got there I was grateful but it sucks that some of our interactions can be like that. I feel like I have failed as his mother that I resisted as much as I did. That's when it sucks too.
I also forget how it's not just our little immediate family circle that is effected. Listening to my mom give me parenting advice and sympathy but it's paired with "I wish I knew what to say. I never parented a kid with autism." I can hear her voice catch. I tell her it's okay. I don't expect her to know. That's another "situationly sucky" moment. She worries about me AND him. (By the way "Granny Fry", that WAS the perfect thing to say at that moment. That's exactly what I needed to hear. So maybe it didn't "situationly suck" after all?)
His autism isn't going anywhere. I'm okay with that. It makes him, well, him. I just hate watching him struggle. I just don't care for the moments when it "situationly sucks". I keep trying to help and support him as much as I can. I just wish the "situationly suck" moments were less, for the both of us.
The other day I was having a virtual chin wag with some other autism moms and dads I know. It would safe to say we all came from very different backgrounds and all of us had very different kids. So it wasn't surprising that some of us were "Tote McGoats" with ye olde autism and some of us were all "It sucks." I had a moment where I wasn't even sure what my current feelings were other than "It depends on the situation. It can "situationly suck". (Yes, I'm aware that "situationly" isn't a word. What can I say? I'm a visionary.). Hear me out before you come at me with your perky pitchforks and torches of why autism is fantastic. I know it is too.
My son has two parents who have a different neurological make up. Two parents who's communication is completely foreign to his own. He is stuck with two people responsible for his well being that still aren't fluent in his language, "Kiddoense", as I call it. Every interaction, every exchange, and every conversation can be both stressful and enlightening to both of us. I would venture to guess he's having just as many "Oh. So that's what they meant!" moments as we do. Tons of information being processed at all times. Busy even while at rest. That's when it can suck a little.
I have missed so many signs of impending illness and or anxiety inducing situations simply because he can't tell me off the bat, "Ma, I don't feel good." or "I'm scared". That more than sucks, that breaks my heart. Time and time again I will be cursing myself about how I didn't notice the signs as I'm cleaning up his puke or trying to soothe him when he is upset. He can tell me the number of a hotel room we stayed three years ago on a vacation but can't tell me that his ears are hurting him when he has an infection. That blows. As a mom, my instinct is cuddle and wrap my arms around him to comfort him when he is frightened but with his sensory issues being what they are, it is the last thing he needs or wants. I won't lie. That is so freaking hard for me. I know that's my issue and I have to deal with it. It's just not the type of mothering I thought I would be doing. All these years later, still not used to it. It sucks for him that he still has to remind me what he needs or can handle.
My son has amazed me with how he views the world. It's opened doorways I didn't even know were there. He didn't just knock politely on those doors either. He slammed them open like that TV character "Kramer" on Seinfeld. Jarring as that is, it's been awesome. Eye and mind opening. I appreciate his patience with me because sometimes I didn't feel like walking through those doorways. He dragged me in kicking and screaming. Once I got there I was grateful but it sucks that some of our interactions can be like that. I feel like I have failed as his mother that I resisted as much as I did. That's when it sucks too.
I also forget how it's not just our little immediate family circle that is effected. Listening to my mom give me parenting advice and sympathy but it's paired with "I wish I knew what to say. I never parented a kid with autism." I can hear her voice catch. I tell her it's okay. I don't expect her to know. That's another "situationly sucky" moment. She worries about me AND him. (By the way "Granny Fry", that WAS the perfect thing to say at that moment. That's exactly what I needed to hear. So maybe it didn't "situationly suck" after all?)
His autism isn't going anywhere. I'm okay with that. It makes him, well, him. I just hate watching him struggle. I just don't care for the moments when it "situationly sucks". I keep trying to help and support him as much as I can. I just wish the "situationly suck" moments were less, for the both of us.
Tuesday, March 11, 2014
The weight of his words
Last night the kiddo came out of his appointment with his speech therapist. As he was wrangling himself into his coat, she shared a cute moment with him. They have been working on descriptive words as a way to expand his sentence making. He's starting to slowly get the concept of it but his literal autism mind made quite an appearance.
She wrote out the sentence. "I will eat ice cream for dessert. The ice cream feels________. " Now to you, you might reply "cold". The sentence before was about eating soup for lunch and how it was hot. The kiddo's answer?
"The ice cream feels HAPPY!"
Now I have to admit, a Dairy Queen ice cream sundae makes me feel happy on many occasions. Especially when it's nice out and you can eat it outside. I swear ice cream always tastes ten times better when eaten outdoors. Anywho, we had a nice little chuckle about it but it reminded us both just how literal he takes any word spoken and how tough it can be to teach abstract concepts. Last year in school, they really drove home the concepts of feelings. I was pretty grateful for it in some ways because I could see it as 1) A good conversation starter "How are you?" or as we say in Jersey "How you doin'?" 2) He could actually tell me when he was upset and I wouldn't have to play the autism guessing game of what's going on with him. I don't play that game very well. I often lose.
Now I realize I have to teach him about feeling feelings and about feeling things. It's one of those moments where I wonder why they are trying to teach him Spanish in school too. Really, he's having a hard enough time with English and didn't Dora the Explorer teach him all the Spanish he needs to know using Swiper and the big red chicken?
I have to laugh when I think about another autism mom tweeting once "Don't take things so literally." and I wanted to tweet back "Does your kid actually live with you?" This is our whole life. LITERALLY!! Words have more weight to him than anyone else in my house. If you have something to say, you better say what you mean and mean what you say. My kiddo is the master loop hole finder. Matlock would be reduced to tears by my son. My husband was recently caught by the kiddo when he was thinking out loud to himself about POSSIBLE weekend plans. I could of killed him. It was like he was new here. You can't discuss possible around the kiddo. It's set in stone once it passes your lips!
All I know is, if you asked the kiddo if eating French Fries made him feel happy, he'd say yes to that too. :-)
She wrote out the sentence. "I will eat ice cream for dessert. The ice cream feels________. " Now to you, you might reply "cold". The sentence before was about eating soup for lunch and how it was hot. The kiddo's answer?
"The ice cream feels HAPPY!"
Now I have to admit, a Dairy Queen ice cream sundae makes me feel happy on many occasions. Especially when it's nice out and you can eat it outside. I swear ice cream always tastes ten times better when eaten outdoors. Anywho, we had a nice little chuckle about it but it reminded us both just how literal he takes any word spoken and how tough it can be to teach abstract concepts. Last year in school, they really drove home the concepts of feelings. I was pretty grateful for it in some ways because I could see it as 1) A good conversation starter "How are you?" or as we say in Jersey "How you doin'?" 2) He could actually tell me when he was upset and I wouldn't have to play the autism guessing game of what's going on with him. I don't play that game very well. I often lose.
Now I realize I have to teach him about feeling feelings and about feeling things. It's one of those moments where I wonder why they are trying to teach him Spanish in school too. Really, he's having a hard enough time with English and didn't Dora the Explorer teach him all the Spanish he needs to know using Swiper and the big red chicken?
I have to laugh when I think about another autism mom tweeting once "Don't take things so literally." and I wanted to tweet back "Does your kid actually live with you?" This is our whole life. LITERALLY!! Words have more weight to him than anyone else in my house. If you have something to say, you better say what you mean and mean what you say. My kiddo is the master loop hole finder. Matlock would be reduced to tears by my son. My husband was recently caught by the kiddo when he was thinking out loud to himself about POSSIBLE weekend plans. I could of killed him. It was like he was new here. You can't discuss possible around the kiddo. It's set in stone once it passes your lips!
All I know is, if you asked the kiddo if eating French Fries made him feel happy, he'd say yes to that too. :-)
Tuesday, March 4, 2014
The hill you die upon
My older brother has taught me two very smart lessons. 1) Never play kid music in your car. Your car, your music. Unless you want to listen to Cailou's Greatest Hits for eternity. (Good advice Big Bro. That's why my kiddo requests Queen and James Taylor when we drive.) 2) "The hill you die upon." He was saying it in regards to a person we both knew that had started a Facebook scuffle. The topic? The "R" word. On my own personal profile page. One person just could not wrap his head around the idea that this might be offensive, demeaning and just plain hurtful despite my own and others' request to drop it. I will never forget talking about it later with my brother and how he just summed it up perfectly. "Like that's the hill he wanted to die upon. Really?"
In case you haven't figured it out by now, autism is one of the hills I will do battle on but spreading the word to end the word is another. Let's just take a moment and explore the stages of a person who uses this word and is corrected for it. Most of the time it is a case of they just didn't think or know better. They usually make amends and we all move on. There are others who cannot take being told that their speech is offensive and it usually goes something like this;
Yes, free speech protects you. It gives you the right to say it. It also gives me the right to react to it. It doesn't protect you from hearing my retort because there's me using my right to free speech. Isn't that marvelous how that works?
You are offended that you have been ask to NOT use a word that you used to use when you were on the playground as a ten year old. Haven't you changed since then? You used to think New Kids on the Block was the best band ever. Still do? Didn't think so. Perhaps it's time to embrace that's using the word "retard" or saying "that's retarded" makes you sound about as outdated as an 8 track player.
You can't understand why I get so worked up over this word. I can't understand why you get so worked up over defending your right to it. Hear what I am about to say. You're not offended until it effects you. Then you will be up in arms. So understand this is my up in arms moment and always will be. This is the hill I am willing to die upon. I have a son with autism so of course, this is extremely personal to me. Look around my friend, autism is everywhere. Closer to you than you might even be aware of and I haven't even touched on those with other disabilities. If you are kind enough to hold a door for someone, why can't you hold your tongue about a single word?
Oh you want to bust out a dictionary and point out how this word is used in music. How right on the sheet music of a song you see it, alerting the reader the song is to be played slowly. Yeah, are we really at this moment talking about that? We're not. You know it. I know it. You know when you hear someone use that argument of "Oh why can't I say the "N" word cause rappers do". You're not Jay Z and no I"m not a fan of that word either. When you defend your right to use the "R" word, that's what you sound like to me. Just as ridiculous. You will never hear my son refer to another person who has any sort of intellectual disability by this term and mean it in some endearing/bonding way. Nope.
Oh it's a medical term! Yes, a completely outdated and no longer used one. If you see a doctor that still uses it, I urge you to find new medical care. Chances are they aren't up on a lot of medical information either.
Things can be fire retardant. Why yes, they can be and thank goodness for such a technological advance. I am rather firmly against things catching fire. I am also against you pretending this argument is valid when you try to compare fire retardant treated items and the phrase "That's retarded!" as the same. It's not. One keeps kid's pajamas from catching fire. The other is used to liken a human being to an object that no one wants or values.
It's boils down to this. Be kind. Compassion is missing far too often in this world. You may say "I didn't mean your kiddo." but here's the thing. You referred to some body's kid. Another human being, who has a family and friends. Likes and dislikes. Strengths and weaknesses. Something to offer this Earth we all live on. If you have not already, I urge you to take the pledge at http://www.r-word.org/.
We all have many battles to fight but don't let this be the hill you choose to die upon. Choose kindness. Choose empathy. Choose anything but this word. Choose to have an open mind.
In case you haven't figured it out by now, autism is one of the hills I will do battle on but spreading the word to end the word is another. Let's just take a moment and explore the stages of a person who uses this word and is corrected for it. Most of the time it is a case of they just didn't think or know better. They usually make amends and we all move on. There are others who cannot take being told that their speech is offensive and it usually goes something like this;
Yes, free speech protects you. It gives you the right to say it. It also gives me the right to react to it. It doesn't protect you from hearing my retort because there's me using my right to free speech. Isn't that marvelous how that works?
You are offended that you have been ask to NOT use a word that you used to use when you were on the playground as a ten year old. Haven't you changed since then? You used to think New Kids on the Block was the best band ever. Still do? Didn't think so. Perhaps it's time to embrace that's using the word "retard" or saying "that's retarded" makes you sound about as outdated as an 8 track player.
You can't understand why I get so worked up over this word. I can't understand why you get so worked up over defending your right to it. Hear what I am about to say. You're not offended until it effects you. Then you will be up in arms. So understand this is my up in arms moment and always will be. This is the hill I am willing to die upon. I have a son with autism so of course, this is extremely personal to me. Look around my friend, autism is everywhere. Closer to you than you might even be aware of and I haven't even touched on those with other disabilities. If you are kind enough to hold a door for someone, why can't you hold your tongue about a single word?
Oh you want to bust out a dictionary and point out how this word is used in music. How right on the sheet music of a song you see it, alerting the reader the song is to be played slowly. Yeah, are we really at this moment talking about that? We're not. You know it. I know it. You know when you hear someone use that argument of "Oh why can't I say the "N" word cause rappers do". You're not Jay Z and no I"m not a fan of that word either. When you defend your right to use the "R" word, that's what you sound like to me. Just as ridiculous. You will never hear my son refer to another person who has any sort of intellectual disability by this term and mean it in some endearing/bonding way. Nope.
Oh it's a medical term! Yes, a completely outdated and no longer used one. If you see a doctor that still uses it, I urge you to find new medical care. Chances are they aren't up on a lot of medical information either.
Things can be fire retardant. Why yes, they can be and thank goodness for such a technological advance. I am rather firmly against things catching fire. I am also against you pretending this argument is valid when you try to compare fire retardant treated items and the phrase "That's retarded!" as the same. It's not. One keeps kid's pajamas from catching fire. The other is used to liken a human being to an object that no one wants or values.
It's boils down to this. Be kind. Compassion is missing far too often in this world. You may say "I didn't mean your kiddo." but here's the thing. You referred to some body's kid. Another human being, who has a family and friends. Likes and dislikes. Strengths and weaknesses. Something to offer this Earth we all live on. If you have not already, I urge you to take the pledge at http://www.r-word.org/.
We all have many battles to fight but don't let this be the hill you choose to die upon. Choose kindness. Choose empathy. Choose anything but this word. Choose to have an open mind.
Tuesday, February 25, 2014
When progress bit me on the ass
Cursing. Yep, The Kiddo went there. I suspect because I often led him there. I know I did. My potty mouth is terrible. For years, I was able to keep it in check at work because they usually frown upon it. Then I would let out the blue streak out of my mouth as soon as I got in my car and throughout the rest of my day. Sometimes it just feels damn good to say "Fuck it!"
I'm not working outside the home anymore and I"m a mom now. I really ought to known better. I do know better. However, old habits die hard and I don't have a behavior therapist doing ABA on me. Plus, I took great advantage of the kiddo being completely non verbal for a long time. Hell, I would of been happy if he said "Shit" when he was first diagnosed. Especially to this one early intervention therapist who was kind of a stuck up know it all. She could of used it. Would of knocked her down a few pegs. I'm sure there are few parents reading this now who are thinking "I"d be happy if my kid said anything. Hey, it's language". Fuck yeah it is!
But let me tell ya something, when it does happen, duuuuuuude. There's really no other way to describe it. Last Monday he started saying "It's fucking crazy." and like some sort of autism mom rookie I made the huge mistake of making a big gasp sound. He got a wonderful shocked reaction out of me and that was all the reinforcer he needed to keep saying it all day long. Then the most mortifying moment of my life as his mom happened. He repeated it loud and clear in the PACKED waiting room at speech therapy. I quickly scolded him but I also knew I was fighting for his attention as several adults were starring at him with that "Did he just say that???" So now he not only had my reaction, he had about five more adults giving him feedback that this an awesome attention getting behavior! YAY!! When he went in for his appointment, I went to hide in my car. I couldn't even stay in the room, I felt that ashamed. Of course, the kiddo decided to test this brand new fantastic sentence on his speech therapist during their appointment. I like to think she was at least impressed with his articulation. I mean, it's no "S" blends like "shit" but hey, we're still working on that one.
So it's emails off to the teacher warning her of this habit. I had a stern sit down with the kiddo explaining how he couldn't say it and Mommy wasn't going to either. (Well in my head I will be screaming it but I got to put forth equal effort here) Don't say it in school. In true literal thinking fashion, he did NOT say it in class or to his teacher. He did however say it to the school nurse when he went for his meds, his school OT and his school speech therapist. DANDY! She sent home what she is doing in class to address it. I am following it at home. It's gotten better. I also think though, it's never going to fully go away. For a kiddo that usually avoids eye contact, he LOVES all eyes on him and he knows this is a way to get that. To paraphrase the Notorious B.I.G. here. Mo' Speech, Mo' Problems YO!
We managed to get through yesterday's speech session without dropping the F bomb in the waiting room. I was able to wait in there without feeling like the world's worst mom in America. It reminded me also I just can't ever assume he won't pick up on a word I say. That he won't understand the meaning in it. He knew that saying this way a big deal. I"m sure with this terrible winter we are having, he heard me referring to all the snow days as "Fucking crazy". I messed this up so I have to fix it.
Eh, could of been worse right? Could of been like this time he managed to get passed the baby gate on our bar and broke a bottle of vermouth on the floor ten minutes before the bus was due to come. Nothing like sending your kiddo into preschool smelling like a dry martini!
I'm not working outside the home anymore and I"m a mom now. I really ought to known better. I do know better. However, old habits die hard and I don't have a behavior therapist doing ABA on me. Plus, I took great advantage of the kiddo being completely non verbal for a long time. Hell, I would of been happy if he said "Shit" when he was first diagnosed. Especially to this one early intervention therapist who was kind of a stuck up know it all. She could of used it. Would of knocked her down a few pegs. I'm sure there are few parents reading this now who are thinking "I"d be happy if my kid said anything. Hey, it's language". Fuck yeah it is!
But let me tell ya something, when it does happen, duuuuuuude. There's really no other way to describe it. Last Monday he started saying "It's fucking crazy." and like some sort of autism mom rookie I made the huge mistake of making a big gasp sound. He got a wonderful shocked reaction out of me and that was all the reinforcer he needed to keep saying it all day long. Then the most mortifying moment of my life as his mom happened. He repeated it loud and clear in the PACKED waiting room at speech therapy. I quickly scolded him but I also knew I was fighting for his attention as several adults were starring at him with that "Did he just say that???" So now he not only had my reaction, he had about five more adults giving him feedback that this an awesome attention getting behavior! YAY!! When he went in for his appointment, I went to hide in my car. I couldn't even stay in the room, I felt that ashamed. Of course, the kiddo decided to test this brand new fantastic sentence on his speech therapist during their appointment. I like to think she was at least impressed with his articulation. I mean, it's no "S" blends like "shit" but hey, we're still working on that one.
So it's emails off to the teacher warning her of this habit. I had a stern sit down with the kiddo explaining how he couldn't say it and Mommy wasn't going to either. (Well in my head I will be screaming it but I got to put forth equal effort here) Don't say it in school. In true literal thinking fashion, he did NOT say it in class or to his teacher. He did however say it to the school nurse when he went for his meds, his school OT and his school speech therapist. DANDY! She sent home what she is doing in class to address it. I am following it at home. It's gotten better. I also think though, it's never going to fully go away. For a kiddo that usually avoids eye contact, he LOVES all eyes on him and he knows this is a way to get that. To paraphrase the Notorious B.I.G. here. Mo' Speech, Mo' Problems YO!
We managed to get through yesterday's speech session without dropping the F bomb in the waiting room. I was able to wait in there without feeling like the world's worst mom in America. It reminded me also I just can't ever assume he won't pick up on a word I say. That he won't understand the meaning in it. He knew that saying this way a big deal. I"m sure with this terrible winter we are having, he heard me referring to all the snow days as "Fucking crazy". I messed this up so I have to fix it.
Eh, could of been worse right? Could of been like this time he managed to get passed the baby gate on our bar and broke a bottle of vermouth on the floor ten minutes before the bus was due to come. Nothing like sending your kiddo into preschool smelling like a dry martini!
Tuesday, February 18, 2014
Same as it ever was...
Being the woman who is rapidly approaching forty, 80's tunes are my childhood/teen years. Certain songs have taken on new meaning to me as an adult. Mainly because I think there were just certain lyrics I just didn't get. I'm pretty convinced now that Talking Heads must of recorded "Once In A Lifetime" after talking to an ASD mom or dad because of the following line below. If I had a dollar for every time I thought it I could pay off my house, your house and maybe a lot of other houses. Like an Autism Oprah or something.
"And you may ask yourself-Well...How did I get here?"
Seriously, some days I just walk around in a fog. It's not just a sleep deprived one. This life is so surreal. Nobody signs up for this and nothing can prepare you for it. Thank god for the well established routines because many days I am working on auto pilot. I get to the end of my day and realize I have no idea how I got here. How did I mange to pull off another of this up and down life? Cause I am guessing as I go here. A lot. I don't just live in the state of New Jersey. More like a state of disbelief.
"And you may tell yourself This is not my beautiful house!"
I am typing this in a living room with no lamps in it because my son has broken all three that are in it. It's been months and we still haven't replaced them. Part of me even thinks "Why bother? It will just happen again." I joked with a girlfriend yesterday it means we can't have people over at night to entertain but even that's not true. Entertaining people can sometimes be so overwhelming to the kiddo that we often don't even try. The build up to the event itself is an anxiety marathon of scripting. What will happen. Who will be here. He then obsesses on their behaviors and actions and is annoyed that I can't guarantee what car they will drive here or what hat they will wear. It's impossible to clean up after him as he returns everything to all the places I just picked things up from. My order is his out of order. Forget ever throwing out any toy without hell to pay. There's no telling when he'll return to an obsession and I don't really want to be without it at 2AM when he desperately needs it in order to sleep. I live in a home where I go to sleep in one bed and wake up in another and consider it normal if I only had to do that once in the night.
"And you may ask yourself
Am I right?...Am I wrong?
And you may tell yourself
MY GOD!...WHAT HAVE I DONE?"
Every day I ask myself this. Every. Damn. Day. We just stopped private OT for various reasons. Was it the right call? Will he regress? Will he be traumatized that he isn't going to get to go anymore? Therapists become our friends now. Not coaches at little leagues or Den leaders at scouts. Am I wrong for stopping an activity that we were kind of certain he had hit a wall? Should I made more sacrifices to try and keep going? Even though we are shelling out so much freaking money as is on therapies on one income. What about these meds he is on or the food that he eats or the amount of sleep he gets or the soap in the bathroom or the very air we breathe. I'm convinced daily I have screwed him up beyond repair. Thanks judgmental Internet trolls who leave comments on my blog or on my facebook page confirming those fears. Appreciate it! Most be exhausting, having to correct the entire web on their choices. However do you manage?
"Same as it ever was...Same as it ever was...Same as it ever was...
Same as it ever was...Same as it ever was...Same as it ever was...
Same as it ever was...Same as it ever was..."
Yeah, David Byrne really gets me. Gets this this life. I'd like to buy him a side of fries. I can resent my kiddo's rigid need of schedules and routines and yet at the same time I would cut a bitch if someone try to mess with the system. I may not like how our life is sometimes but it doesn't mean I love my kiddo any less. I get tired of the sameness but need it too. I'm just guessing here so much and if something works, well, we're keeping things the same as it ever was. :-)
Subscribe to:
Posts (Atom)