First things first, are you pregnant? Do you plan to become pregnant? Wait! Stop! Don't breathe! This just in, breathing during pregnancy causes Autism. This is based on zero fact and completely meant to instill fear and perpetuate ignorance and misinformation. You're welcome. Remember folks you heard it from me first.
Okay seriously, I'm sick and tired. I'm tired of hearing that x,y,z causes autism and new "evidence" shows a link to x,y,z....based on zero actual fact. So here is the translation: You did something to cause your child's autism and if you're pregnant and eat at all, don't live in a bubble, well then your kid is going to get the autism too and it will be all your friggan fault....take the mommy shame with a side of guilt and future remorse. Bam.
Today I was in my OB's office and I happened to have Asher with me (Fuck you professional development day right after a holiday) His behavior was....special. You know aside from the fact that he is autistic, he is also three and a half and waiting is not his forte. Anyway, a very pregnant young woman next to me decided that my hands weren't full enough and that what I needed was for her to chat my ears away while my OB ran 45 minutes behind.
I learned that this woman is expecting her first baby, she is not getting the flu shot or doing the glucose screening, because you know...she doesn't want to increase her chances of having a baby with autism, she even refused all ultrasounds... too risky. But I'm not judging, because well to each their own. I mean I inwardly laughed at the sugar glucola drink to screen for diabetes because well lol..but whatever.
But halfway through her non stop chatter she stops and says "You have your hands full there" Yeah what gave that away? The fact that you're practically talking to yourself while I chase my son and wrestle him before he runs out of the room? Or maybe she breathed long enough to realize that my child is screaming "stop talkin at me!" In any event, she surveyed the scene in front of her and said "I'm not an expert but he is acting a little autistic if you ask me"
Okay to stay with me. Because you guys know me. I just looked at her, purposefully made her feel uncomfortable while maintaining silent eye contact and slowly said "Well that is because he IS Autistic and you're bothering him" I give her credit. She looked a little put off, but then she almost whispered "So you're having another one? I think I read somewhere that your next baby will definately be autistic too"
Don't judge me too harshly here. But I leaned in and said "speaking of risk factors based on zero study and fact, I think your child is bound to be rude....you know like mother like child" I was going to scoop up Asher and move away, but she beat me to it.
Anyway, I'm a pretty regular poster on a mommy message board. It is a general board, so the only real thing we all have in common is being pregnant at the same time. But honestly, it seems like everyday I am typing "FOR FUCK SAKE PEOPLE" because I'm constantly reading crap like "OMG did you guys know pitocin causes autism?" "I'm not getting the flu shot because I don't want a child with Autism" "Did you guys know we should be avoiding red and blue dyes"
Really everyone, just shut the fuck up. I honestly believe that anyone, anyone out there who is spurting crap about autism and does not have a child with autism...well they just need to shut up. Stop spreading fear, stop spreading misinformation, stop fucking blaming people for what is essentially a genetic toss of the neurological dice. Lucky for me, I'm a smart girl and a bit of a bitch, so I'm resilient. I'm not about to let a single person tell me that I did this to my son. But there are women with children like Asher or more severe who read this stuff and think "OMG I let them induce me, I let my son down, I should have just waited until I was 48 weeks pregnant and then he'd be fine" For me it would be more like "Fuck dude, I ate way too many chocolate donuts when I was pregnant with Asher...oooops, who knew chocolate causes autism?" For Fuck sake.
The fact is, Asher is my son, but he is also Phill's son. Our genes combined in a way that made Asher, everything that he is. The awesome, the good, the normal, the eh, and the ugly. And it is just who he is. This little boy would not have been born to anyone else exactly the way he is, regardless of the similarities in pregnancies, how many donuts were eaten, if the flu shot was had, or if mom opted for a natural delivery vs and induction. This child is my child, he is Asher, and he is special in many many ways.
Sometimes I read this crap and while I silently laugh at the stupidity of it all, another part of me panics "What will I do if my little girl is like this too? Can I handle two of them? Would I be a good mother to two high needs kids?" All mothers to be worry, but special needs mamas worry at a different level. The what ifs are bigger and the whys may never be answered. The only thing that would really help, would be people just shutting up every once and a while, thinking about what they are saying, the message they are sending, the judgements they are throwing out.
Wait wait.....don't blink, don't eat x,y,z, next thing you know you'll be telling me those things cause heart defects...oh wait we were talking about something else.
Tuesday, January 21, 2014
Tuesday, November 26, 2013
30 Days of Thankfulness Day 26 : Setbacks
Sometimes it is really hard and a little sad to look back at where we started. But I've been doing it a lot lately. Of course we started like everyone else. I delivered a little boy, a lifelong dream and thought "finally this is happiness" Asher our cute little baby, he has medical issues, but he was happy and meeting all his developmental markers. Like most new moms, I annoyingly posted about all his milestones to anyone who would listen. "Omg he is talking in 2 word sentences at 12 months!" So advanced. Sigh. He walked at 8 months, he talked early, it seems he never wanted to be a baby, always striving towards being a big kid.
He had a lovely personality, he flirted with cute waitresses and little old ladies. People stopped us in the mall to tell us how gorgeous our baby was. People wanted to hold him. Medical complications aside, we felt so...blessed. And then one day it crashed down. I remember very clearly the time frame because it started the week before my Aunt Cathy passed away. Asher and Ethan both were so sick, for a week straight they had super high fevers above 104. Antibiotics, breathing treatments...long sleepless nights and at least a handful of visits to the pedi and one or two to the ER. Naturally he was quieter, he was sick. Sometime after my aunt's funeral, I noticed he wasn't himself anymore. He had gotten better but was still quiet. Eerily quiet. And then it hit me, he was too quiet.
I remember sneaking up behind him and screaming his name as loud as I could. The panic when he didn't startle, didn't look up, didn't even notice me. I thought, we thought, everyone though that he had lost his hearing, that somehow in the illness Asher had gone deaf. And I remember being like "okay I can do this, I can understand this" and going ahead with the appts. I was worried but not panicked. I could sign, I could teach him, we could do this. But then brain stem stimulation showed that his hearing was perfect. This event started the year of our journey toward his autism diagnosis. Set back one, loss of communication. Set back two, loss of a happy baby. Set back three, loss of all social communication.
That was the beginning. In those early lost days I would leave playdates with out children and ugly cry the whole way home. It was hard to see a light at the end of our dark lonely tunnel. It was so hard not to despair. What had happened to my happy, social, noisy little guy? How does that happen over night, like a snap of the fingers? Switch of a light? Poof!
He has come so far since then. It is so hard to read his testing from last spring and even reconcile that he is the same little boy. It has been forever since I left a playdate without a smile on my face, left feeling despair. It has been so long. There have been little set backs, but we've handled them in stride. You learn to do that as an autism Mama. But we have been getting used to the upswing, because it feels so good to be on the end of things.
But then a couple things have happened. I got pregnant and life has been a struggle. I've been sick and not able to pick him up, play the way I used to, spend long periods of time reinforcing therapies. His classroom teacher left for a new position, we had to change his speech therapist because we could no longer make the hour plus drive. A couple beloved friends moved onto kindergarten. And because I'm not super mobile he hasn't see some of his important people as often as he used to. We saw the behaviors, but we understood them and told ourselves "Don't worry kids regress, kids like Asher regress"
But then it happened. We went on a nightmare playdate and I didn't cry on the way home, but almost. He was yelled at in public by a crazy dad who called him an "f'n brat, a little nightmare". Once again people started to give us that look like "Why do you bring him in public?" I've dealt with it all, I haven't cried. I even laughed at the crazy dad.
But then we went to a birthday party comprised of kids from two different special ed classrooms. Bar one or two, all the children there were special in some manner. Many of them carried the same DX as Asher. Yet my kid was the one who stuck out, the different one, the worst one there. We ended up leaving the party before a lot of the kids, he was over stimulated, friend, burnt out. And for the first time in a very long time I cried leaving a party or playdate. I cried the whole way home.
So today I prepped myself for Asher's parent teacher conference. I had been told ahead of time that it would just be the teacher and I, informal to discuss progress. My heart sank when I walked into the room and saw the whole team, including the autism specialist. Well crap. Really just "fuck" Sorry but sometimes there aren't better words. "fuck"
This summer I was so excited because the school had this awesome plan to ease Asher out of his sub sep room, move him into a typical classroom, with typical peers. We had this awesome goal for him and no one said he couldn't do it. The light in the tunnel was so bright. And I really wanted it for him. I really really did. When I went to bed last night, I thought "well they may say he has had setbacks" But I didn't expect them to change the plan.
It is funny, even though I sat there and I listened to all the reasons why the plan is no longer right, all the things that still needed to be worked on, everything that normally would have killed me to hear, I could still see the light at the end of the tunnel. It may be flickering and a little bit dimmer, but I think maybe I've allowed myself to grow and no longer to set backs as set backs and maybe just paths to a different turn in the road.
So I guess, even though it is hard to feel thrilled and happy, I am thankful that even in dissapointment, set backs, and deviations from a very much wanted goal, we can still see Asher's light burning brightly. We still see him moving forward. And that is something to be grateful for. It wasn't too long ago really that we sat staring at a baby that was completely silent and later a toddler who was so clearly different than what he should be. And even through set backs, we aren't there. He is himself, just Asher, and we'll take the set backs with the gains. We'll roll with it. And be grateful that we can still see the end goal. It is still there.
He had a lovely personality, he flirted with cute waitresses and little old ladies. People stopped us in the mall to tell us how gorgeous our baby was. People wanted to hold him. Medical complications aside, we felt so...blessed. And then one day it crashed down. I remember very clearly the time frame because it started the week before my Aunt Cathy passed away. Asher and Ethan both were so sick, for a week straight they had super high fevers above 104. Antibiotics, breathing treatments...long sleepless nights and at least a handful of visits to the pedi and one or two to the ER. Naturally he was quieter, he was sick. Sometime after my aunt's funeral, I noticed he wasn't himself anymore. He had gotten better but was still quiet. Eerily quiet. And then it hit me, he was too quiet.
I remember sneaking up behind him and screaming his name as loud as I could. The panic when he didn't startle, didn't look up, didn't even notice me. I thought, we thought, everyone though that he had lost his hearing, that somehow in the illness Asher had gone deaf. And I remember being like "okay I can do this, I can understand this" and going ahead with the appts. I was worried but not panicked. I could sign, I could teach him, we could do this. But then brain stem stimulation showed that his hearing was perfect. This event started the year of our journey toward his autism diagnosis. Set back one, loss of communication. Set back two, loss of a happy baby. Set back three, loss of all social communication.
That was the beginning. In those early lost days I would leave playdates with out children and ugly cry the whole way home. It was hard to see a light at the end of our dark lonely tunnel. It was so hard not to despair. What had happened to my happy, social, noisy little guy? How does that happen over night, like a snap of the fingers? Switch of a light? Poof!
He has come so far since then. It is so hard to read his testing from last spring and even reconcile that he is the same little boy. It has been forever since I left a playdate without a smile on my face, left feeling despair. It has been so long. There have been little set backs, but we've handled them in stride. You learn to do that as an autism Mama. But we have been getting used to the upswing, because it feels so good to be on the end of things.
But then a couple things have happened. I got pregnant and life has been a struggle. I've been sick and not able to pick him up, play the way I used to, spend long periods of time reinforcing therapies. His classroom teacher left for a new position, we had to change his speech therapist because we could no longer make the hour plus drive. A couple beloved friends moved onto kindergarten. And because I'm not super mobile he hasn't see some of his important people as often as he used to. We saw the behaviors, but we understood them and told ourselves "Don't worry kids regress, kids like Asher regress"
But then it happened. We went on a nightmare playdate and I didn't cry on the way home, but almost. He was yelled at in public by a crazy dad who called him an "f'n brat, a little nightmare". Once again people started to give us that look like "Why do you bring him in public?" I've dealt with it all, I haven't cried. I even laughed at the crazy dad.
But then we went to a birthday party comprised of kids from two different special ed classrooms. Bar one or two, all the children there were special in some manner. Many of them carried the same DX as Asher. Yet my kid was the one who stuck out, the different one, the worst one there. We ended up leaving the party before a lot of the kids, he was over stimulated, friend, burnt out. And for the first time in a very long time I cried leaving a party or playdate. I cried the whole way home.
So today I prepped myself for Asher's parent teacher conference. I had been told ahead of time that it would just be the teacher and I, informal to discuss progress. My heart sank when I walked into the room and saw the whole team, including the autism specialist. Well crap. Really just "fuck" Sorry but sometimes there aren't better words. "fuck"
This summer I was so excited because the school had this awesome plan to ease Asher out of his sub sep room, move him into a typical classroom, with typical peers. We had this awesome goal for him and no one said he couldn't do it. The light in the tunnel was so bright. And I really wanted it for him. I really really did. When I went to bed last night, I thought "well they may say he has had setbacks" But I didn't expect them to change the plan.
It is funny, even though I sat there and I listened to all the reasons why the plan is no longer right, all the things that still needed to be worked on, everything that normally would have killed me to hear, I could still see the light at the end of the tunnel. It may be flickering and a little bit dimmer, but I think maybe I've allowed myself to grow and no longer to set backs as set backs and maybe just paths to a different turn in the road.
So I guess, even though it is hard to feel thrilled and happy, I am thankful that even in dissapointment, set backs, and deviations from a very much wanted goal, we can still see Asher's light burning brightly. We still see him moving forward. And that is something to be grateful for. It wasn't too long ago really that we sat staring at a baby that was completely silent and later a toddler who was so clearly different than what he should be. And even through set backs, we aren't there. He is himself, just Asher, and we'll take the set backs with the gains. We'll roll with it. And be grateful that we can still see the end goal. It is still there.
Thursday, October 31, 2013
30 Days of Thankfulness Day One: Patience
When I was little I was “A lot of work”, a “Very needy little girl”, just “too full of energy, a child who “Asked too many questions”, a little girl that got told “Patience is a virtue” a thousand times a day. I was that child. Sounds exhausting.
I have vivid memories of my childhood. I remember whole conversations, experiences, situations, all in great detail. I am a sentimental person and I’ve held onto my memories, unwilling to let them go.
I have good memories, lots of bad ones, some just “ugh being a child sucks”, but overall I remember people never listening long enough, never stopping long enough, and getting left behind with something important to say, needing to be heard, needing someone, anyone to just hang in there and wait for the end, for the message, someone to say “Wow, hanging in there was difficult, but I’m glad I did” Incidentally, this happened to me a handful of times before I was 20. Once in sixth grade, because I had an awesome sixth grade teacher who went out of his way to make every single student feel valuable, important, and special. And then once in college when my favorite professor told me. “Holly when I finished that very first lecture I had with you, all I could think was this is my know it all student, blah blah. But shame on me, because I hung in there and I’ve listened. And what I’ve come to realize is that everything you have to say is important and useful. You’ve taught me to slow down and listen” The other handful of times were by a woman who took care of me and loved me, even though she didn’t have to. I have called this woman many things, my foster mother, my friend, almost like a sister, but now we know her as Asher’s Mimi.
It has never been a great mystery as to why I became a teacher and who inspired me to do so. And never a real mystery why I wanted to be a good mother more than anything else in life. But aside from these two teachers and a foster mother who really understood kids, no adult in my life was able to show me any sort of great patience. So I grew up with none. I can’t stand waiting in lines, time tables really bog me down, things like “Give me give five minutes” really drive me batty. I need fast paced conversation. Keep up people. Disney Land? Forget the kid not being able to wait in lines….damn. It’s one of the reasons I always answer “Epcot” when people ask me what I love most about Disney. I like walking around and getting instant gratification. Even things like starting a family, getting married, going to graduate school, the perfect job…..I was impatient. I couldn’t wait.
Sometimes God slowed me down. Haha Holly, you have to wait for your children because you have infertility. Married? No instead you’re going to adopt a teenager. The perfect job? Nope you’re going to need to muddle through a few until you find where you belong. Awesome creative conversations with my adorable toddler…no, SLOW DOWN, you have a special child. And all these things have been good for me and have required great patience. They have lead me to my life now. I am happy for the most part. I have a specific set of skills that make me valuable in my profession. I am a good friend, mother, sister, and I strive to be a good wife. It has been trying, but in these times I have been grateful for every single experience I’ve had with people who did not show me patience. They were examples of what I didn’t want to be and how to strive to become a more balanced person, one who can wait until things are supposed to happen, instead of trying to force them.
But Grateful for those experiences? Yes. I’ll explain why. Being a mother requires a great deal of patience, we all know that. Even the best mothers crack and lose it from time to time. But good mothers also need compassion and empathy. I feel like a lot of us in our rush to grow up, let go of our childhoods. We shouldn’t do that. We have to remember being a child, when little things felt HUGE and overwhelming. When things that seem so unimportant to adults, just take over little worlds. When an important point is muddled up in a long boring story that is spouted off in an unorganized, long manner….when you just need to hold on until the end to hear that important “little” thing….even if it means not answering the phone, putting down the laptop, losing a little bit of “me time” or setting dinner back 10 minutes. Good mothers need that.
And I need that more than I ever thought I would. I need the memories of what it felt like to be that little girl, who never felt heard, who never felt important, who wished everyday people had more patience. And I’m grateful for it. I am grateful for every single time an adult laughed me off, told me to wait and never came back to the conversation, every time someone did not hear me. I am just as grateful for that as I am for the handful of times I was heard.
I’m grateful because I have Asher. And Asher is a child that requires an incredible amount of patience. You really have to hang in there to hear him. Sometimes it means waiting until the end of a 20 minute dialogue from Lilo and Stitch to realize it was the only way he knew how to tell me that he loves his family. Because, “O Hana means family and family means no one gets left behind”. It means taking 50 deep breaths during a tantrum and sticking it out instead of walking away or getting upset, because usually it means that something is going wrong in a sensory manner, that he needs my help. It means listening to jargoning, patiently waiting for a message in language that is echolalic. Not losing it at the play space when I have to guide Asher through the signing and repeating of “I’m sorry friend” for the 80th time.
Patience. And I am not naturally a patient person, it was never really modeled for me. I never learned how to be. And to be honest, we just don’t live in a patient world. But when I want to snap, tune out, walk away, dismiss, I remember being that little girl and how big the little things felt and how it felt not to be listened to, to always be on punishment because it was easier to punish me than listen, to be misunderstood, and brushed aside as “very needy” And I know I will stick it out and I will hang in there for my son.
So I am grateful for the lessons I have been given in patience and how important it can be. Grateful for every single experience that has taught me that. How powerful and life shaping it can be when it is received, how it can change a kid’s world. So I will take the lessons I’ve learned and be patient with my son, always, because I love him and I believe that what he says should be heard, even if I have to pry it out of him, even if he tells me through tantrums and bad behavior or if he tells me through an ecrutiatingly long reenacted scene from Veggie Tales. He is valuable and he will grow up knowing that I know he is important. And maybe if I model it for him and show him what patience really is, instead of just telling him that patience is a virtue, maybe someday he’ll grow up and be an awesome dad, or friend. Maybe he’ll work with kids like himself or be an awesome sixth grade teacher, maybe he will be an example to all what this virtue of patience really looks like….who knows? But today I am grateful for patience and the strength to hold onto it and use it to be a better person.
I also want to say thank you to the few adults in my life that knew this and strove to be a model of this virtue even when I am sure it was difficult to do so. So thank you Peter Anti. Thank you Dr. Corinne Merritt. And thank you most of all Donna Webber. Thank you from the little girl I used to be and thank you from the woman that I have become.
I have vivid memories of my childhood. I remember whole conversations, experiences, situations, all in great detail. I am a sentimental person and I’ve held onto my memories, unwilling to let them go.
I have good memories, lots of bad ones, some just “ugh being a child sucks”, but overall I remember people never listening long enough, never stopping long enough, and getting left behind with something important to say, needing to be heard, needing someone, anyone to just hang in there and wait for the end, for the message, someone to say “Wow, hanging in there was difficult, but I’m glad I did” Incidentally, this happened to me a handful of times before I was 20. Once in sixth grade, because I had an awesome sixth grade teacher who went out of his way to make every single student feel valuable, important, and special. And then once in college when my favorite professor told me. “Holly when I finished that very first lecture I had with you, all I could think was this is my know it all student, blah blah. But shame on me, because I hung in there and I’ve listened. And what I’ve come to realize is that everything you have to say is important and useful. You’ve taught me to slow down and listen” The other handful of times were by a woman who took care of me and loved me, even though she didn’t have to. I have called this woman many things, my foster mother, my friend, almost like a sister, but now we know her as Asher’s Mimi.
It has never been a great mystery as to why I became a teacher and who inspired me to do so. And never a real mystery why I wanted to be a good mother more than anything else in life. But aside from these two teachers and a foster mother who really understood kids, no adult in my life was able to show me any sort of great patience. So I grew up with none. I can’t stand waiting in lines, time tables really bog me down, things like “Give me give five minutes” really drive me batty. I need fast paced conversation. Keep up people. Disney Land? Forget the kid not being able to wait in lines….damn. It’s one of the reasons I always answer “Epcot” when people ask me what I love most about Disney. I like walking around and getting instant gratification. Even things like starting a family, getting married, going to graduate school, the perfect job…..I was impatient. I couldn’t wait.
Sometimes God slowed me down. Haha Holly, you have to wait for your children because you have infertility. Married? No instead you’re going to adopt a teenager. The perfect job? Nope you’re going to need to muddle through a few until you find where you belong. Awesome creative conversations with my adorable toddler…no, SLOW DOWN, you have a special child. And all these things have been good for me and have required great patience. They have lead me to my life now. I am happy for the most part. I have a specific set of skills that make me valuable in my profession. I am a good friend, mother, sister, and I strive to be a good wife. It has been trying, but in these times I have been grateful for every single experience I’ve had with people who did not show me patience. They were examples of what I didn’t want to be and how to strive to become a more balanced person, one who can wait until things are supposed to happen, instead of trying to force them.
But Grateful for those experiences? Yes. I’ll explain why. Being a mother requires a great deal of patience, we all know that. Even the best mothers crack and lose it from time to time. But good mothers also need compassion and empathy. I feel like a lot of us in our rush to grow up, let go of our childhoods. We shouldn’t do that. We have to remember being a child, when little things felt HUGE and overwhelming. When things that seem so unimportant to adults, just take over little worlds. When an important point is muddled up in a long boring story that is spouted off in an unorganized, long manner….when you just need to hold on until the end to hear that important “little” thing….even if it means not answering the phone, putting down the laptop, losing a little bit of “me time” or setting dinner back 10 minutes. Good mothers need that.
And I need that more than I ever thought I would. I need the memories of what it felt like to be that little girl, who never felt heard, who never felt important, who wished everyday people had more patience. And I’m grateful for it. I am grateful for every single time an adult laughed me off, told me to wait and never came back to the conversation, every time someone did not hear me. I am just as grateful for that as I am for the handful of times I was heard.
I’m grateful because I have Asher. And Asher is a child that requires an incredible amount of patience. You really have to hang in there to hear him. Sometimes it means waiting until the end of a 20 minute dialogue from Lilo and Stitch to realize it was the only way he knew how to tell me that he loves his family. Because, “O Hana means family and family means no one gets left behind”. It means taking 50 deep breaths during a tantrum and sticking it out instead of walking away or getting upset, because usually it means that something is going wrong in a sensory manner, that he needs my help. It means listening to jargoning, patiently waiting for a message in language that is echolalic. Not losing it at the play space when I have to guide Asher through the signing and repeating of “I’m sorry friend” for the 80th time.
Patience. And I am not naturally a patient person, it was never really modeled for me. I never learned how to be. And to be honest, we just don’t live in a patient world. But when I want to snap, tune out, walk away, dismiss, I remember being that little girl and how big the little things felt and how it felt not to be listened to, to always be on punishment because it was easier to punish me than listen, to be misunderstood, and brushed aside as “very needy” And I know I will stick it out and I will hang in there for my son.
So I am grateful for the lessons I have been given in patience and how important it can be. Grateful for every single experience that has taught me that. How powerful and life shaping it can be when it is received, how it can change a kid’s world. So I will take the lessons I’ve learned and be patient with my son, always, because I love him and I believe that what he says should be heard, even if I have to pry it out of him, even if he tells me through tantrums and bad behavior or if he tells me through an ecrutiatingly long reenacted scene from Veggie Tales. He is valuable and he will grow up knowing that I know he is important. And maybe if I model it for him and show him what patience really is, instead of just telling him that patience is a virtue, maybe someday he’ll grow up and be an awesome dad, or friend. Maybe he’ll work with kids like himself or be an awesome sixth grade teacher, maybe he will be an example to all what this virtue of patience really looks like….who knows? But today I am grateful for patience and the strength to hold onto it and use it to be a better person.
I also want to say thank you to the few adults in my life that knew this and strove to be a model of this virtue even when I am sure it was difficult to do so. So thank you Peter Anti. Thank you Dr. Corinne Merritt. And thank you most of all Donna Webber. Thank you from the little girl I used to be and thank you from the woman that I have become.
Saturday, September 14, 2013
Fireworks
Someone sent me a link to a Katy Perry video not too long ago, I ignored it, because seriously, I don't like Katy Perry. It was someone who knew me well and I couldn't help thinking "really? I thought you knew me!" Turns out that person knows me so well, they know when I can get past myself and enjoy something on a different level. So a week goes by and I get a FB message "Have you listened to the video yet?" Only I haven't and I can no longer find the link. So this friend directs me to another friend's page and for the first time I see the title "Katy Perry sings Firework with Autistic girl" So now I have to watch even though I've never liked Katy Perry. Wow. I'd never really listened to the words before, it was just a poppy song that I would sometimes listen to on the radio if no other station had something better, but most times I switched it off.
But the words of this song, fit Autism so well. I'll share them here in case you've never really listed. I cut out most of the repeat chorus.
"Firework"
Do you ever feel like a plastic bag
Drifting through the wind, wanting to start again?
Do you ever feel, feel so paper thin
Like a house of cards, one blow from caving in?
Do you ever feel already buried deep six feet under?
Scream but no one seems to hear a thing
Do you know that there's still a chance for you
'Cause there's a spark in you?
You just gotta ignite the light and let it shine
Just own the night like the 4th of July
'Cause, baby, you're a firework
Come on, show 'em what you're worth
Make 'em go "Oh, oh, oh"
As you shoot across the sky-y-y
Baby, you're a firework
Come on, let your colours burst
Make 'em go "Oh, oh, oh"
You're gonna leave 'em all in awe, awe, awe
You don't have to feel like a wasted space
You're original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow
Maybe the reason why all the doors are closed
So you could open one that leads you to the perfect road
Like a lightning bolt, your heart will glow
And when it's time you'll know
You just gotta ignite the light and let it shine
Just own the night like the 4th of July
Boom, boom, boom
Even brighter than the moon, moon, moon
It's always been inside of you, you, you
And now it's time to let it through-ough-ough
So there is a lot in there that a parent of an autistic child can identify with, especially the first lines. But feeling trapped inside and screaming when no one can hear you, I often wonder if that is how Asher feels and what is must feel like for him. It is something I always worry about. To listen to these words and listen to an Autistic child sing them, broke my heart.
But more than that, likening Asher to a firework shooting across the sky, well that makes sense. Sometimes lights come on in his eyes and you can see the fireworks in his head lighting up. On these days we tell him "Wow you're on fire" Because sometimes he is so on it and so with it and so connected to us, himself, his thoughts, and able to communicate what is going on in his brilliant little mind. I really live for these days with him. On these days, it is almost impossible to see the things that make him so different from other children. I can see the fireworks, the little ball of energy shooting around my house, explosion of colorful ideas, make believe, intensity that would have been hard to imagine the day before. He is a firework. It is a perfect description.
So I think of him that way sometimes, a little closed up boy walking around with so much to share and sometimes I wonder what the future will hold for him. It is dangerous to think that way, I've blogged about it in the past, but with a child like Asher you have to live in the day and in the moment and appreciate the small bursts of shinning color when they come.
Lately Asher has really been into "Planes" so despite the fact that it got terrible reviews and he was terrible the last time we took him to the movies, we loaded him up and took him to see it. There were very few people in the theater, and at the table right next to ours, was a three year old little girl. She had adorable red hair and was sitting there so calmly and well behaved. Asher was excited to see the movie and I could see the wheels turning in his head, "Oh no! He is going to get overstimulated!" And I see him struggling, he is bopping back and forth between our chairs, running around the table, asking to be squeezed. And I panic for a moment thinking "Where going to have to leave and he is going to be so disappointed" Ugh. But this little girl came up to him and said:
"I'm Gabriella, wanna sit with me?"
"Yeah, I Asher, let's sit"
And so the two of them move their chairs so they are right next to each other. I glance nervously out of the corner of my eye at the other mom. But she seems fine with this turn of events "Phew!" So I sat back and watched, I listened, I was worried that like most kids, she would get frustrated eventually and he would be left sitting alone. But really as it happened that day, he was on fire. A little firework that charted excitedly to his new friend about the movie, kept her engaged in the conversation. You could see the fireworks going off in his head. It was adorable and what I would expect to see if typical kids seeing a movie together. They cheered when they plane was saved from the Ocean, they cheered when he won the race, they clapped at the end of the movie and I may have even seen them holding hands for the briefest of times.
It was one of those perfect typical days that Autism parents rarely get. And when they do, it is like a gift. I will never see fireworks for the rest of my life and not think of Asher. Hopefully, I won't have to think of Katy Perry every time, but even so, if I do, I just want to say thank you to her, that she is the type of person who would do something like this:
http://www.youtube.com/watch?v=QX-xToQI34I
But the words of this song, fit Autism so well. I'll share them here in case you've never really listed. I cut out most of the repeat chorus.
"Firework"
Do you ever feel like a plastic bag
Drifting through the wind, wanting to start again?
Do you ever feel, feel so paper thin
Like a house of cards, one blow from caving in?
Do you ever feel already buried deep six feet under?
Scream but no one seems to hear a thing
Do you know that there's still a chance for you
'Cause there's a spark in you?
You just gotta ignite the light and let it shine
Just own the night like the 4th of July
'Cause, baby, you're a firework
Come on, show 'em what you're worth
Make 'em go "Oh, oh, oh"
As you shoot across the sky-y-y
Baby, you're a firework
Come on, let your colours burst
Make 'em go "Oh, oh, oh"
You're gonna leave 'em all in awe, awe, awe
You don't have to feel like a wasted space
You're original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow
Maybe the reason why all the doors are closed
So you could open one that leads you to the perfect road
Like a lightning bolt, your heart will glow
And when it's time you'll know
You just gotta ignite the light and let it shine
Just own the night like the 4th of July
Boom, boom, boom
Even brighter than the moon, moon, moon
It's always been inside of you, you, you
And now it's time to let it through-ough-ough
So there is a lot in there that a parent of an autistic child can identify with, especially the first lines. But feeling trapped inside and screaming when no one can hear you, I often wonder if that is how Asher feels and what is must feel like for him. It is something I always worry about. To listen to these words and listen to an Autistic child sing them, broke my heart.
But more than that, likening Asher to a firework shooting across the sky, well that makes sense. Sometimes lights come on in his eyes and you can see the fireworks in his head lighting up. On these days we tell him "Wow you're on fire" Because sometimes he is so on it and so with it and so connected to us, himself, his thoughts, and able to communicate what is going on in his brilliant little mind. I really live for these days with him. On these days, it is almost impossible to see the things that make him so different from other children. I can see the fireworks, the little ball of energy shooting around my house, explosion of colorful ideas, make believe, intensity that would have been hard to imagine the day before. He is a firework. It is a perfect description.
So I think of him that way sometimes, a little closed up boy walking around with so much to share and sometimes I wonder what the future will hold for him. It is dangerous to think that way, I've blogged about it in the past, but with a child like Asher you have to live in the day and in the moment and appreciate the small bursts of shinning color when they come.
Lately Asher has really been into "Planes" so despite the fact that it got terrible reviews and he was terrible the last time we took him to the movies, we loaded him up and took him to see it. There were very few people in the theater, and at the table right next to ours, was a three year old little girl. She had adorable red hair and was sitting there so calmly and well behaved. Asher was excited to see the movie and I could see the wheels turning in his head, "Oh no! He is going to get overstimulated!" And I see him struggling, he is bopping back and forth between our chairs, running around the table, asking to be squeezed. And I panic for a moment thinking "Where going to have to leave and he is going to be so disappointed" Ugh. But this little girl came up to him and said:
"I'm Gabriella, wanna sit with me?"
"Yeah, I Asher, let's sit"
And so the two of them move their chairs so they are right next to each other. I glance nervously out of the corner of my eye at the other mom. But she seems fine with this turn of events "Phew!" So I sat back and watched, I listened, I was worried that like most kids, she would get frustrated eventually and he would be left sitting alone. But really as it happened that day, he was on fire. A little firework that charted excitedly to his new friend about the movie, kept her engaged in the conversation. You could see the fireworks going off in his head. It was adorable and what I would expect to see if typical kids seeing a movie together. They cheered when they plane was saved from the Ocean, they cheered when he won the race, they clapped at the end of the movie and I may have even seen them holding hands for the briefest of times.
It was one of those perfect typical days that Autism parents rarely get. And when they do, it is like a gift. I will never see fireworks for the rest of my life and not think of Asher. Hopefully, I won't have to think of Katy Perry every time, but even so, if I do, I just want to say thank you to her, that she is the type of person who would do something like this:
http://www.youtube.com/watch?v=QX-xToQI34I
Saturday, July 6, 2013
Its been a while...
I'm a bad blogger. I may have mentioned that in the beginning of the whole "cole slaw" project. Maybe I didn't. I haven't updated for two reasons and they are contradictory to each other. 1. There hasn't been much to blog about 2. And there has been so much going on that I haven't had time. Lol. I know that doesn't make sense. But I guess what I am trying to say is that not much has been happening that I think people would really want to read about.
Our lives have continued in the same daze of therapies, fighting insurance, and work work work. Just nothing dramatic. Asher started school, he loves it! He is on a two week break right now and cries for school every morning. I hope he loves school this much when he is older! The two week break has given me the opportunity to do intensive potty training, which was encouraged by the Autism Specialist he sees. He has been successful in many ways, but we've failed miserably in others...mainly in the poop department. Its okay, baby steps. Having Asher as my little boy has really taught me to be okay with taking small successful steps. Patience has never been my strong point.
Asher's language has really taken off! We do sometimes still see the differences between how he uses his language and how typical children use language, but I think his speech is in a pretty good place. The thousands of dollars spent on intensive speech therapy were the best dollars I've ever spent. I'd do it again in a heart beat. The older he gets though, the more clear the parts of him that are "autistic" become. For example, he is so damn rigid with his language.
This morning the house creaked and Asher said "Woah what that?" I told him "Don't worry the house is creaking" He immediately sprung up from the couch and said "Oh no my house is breaking!" I told him "No creaking! The house is not breaking!" He said "NO! Cracking! Is Breaking!" And he has been stressed out about it ever since. He walked up the stairs just now and came back down when he was just halfway up because a stair creaked and he didn't want it to break with him on it. I kinda wish I could go back and use a different explanation like "The house is just saying "Hi" to us" He wouldn't have understood what I meant at all, but he would have accepted that I gave him a passable answer and moved on with his day. Now he is stuck on the damn house breaking and it is driving me batty. I would be thoroughly annoyed if it wasn't for the fact that it is clearly causing him anxiety. I just have to sigh at this point, hug my little boy to reassure him every two minutes, and silently wonder to myself how long until he moves on from thoughts of the house breaking. I'm going to be so mad at myself if I'm still dealing with this in a week...which for us is a very real possibility!
In most ways though, he has just become more of a delightful little boy. He has so many interests and has really started to take of with imaginative play...its really fun to watch! This leads me to my last sentiments for a while. I know this will receive mixed reactions, so I'm saying it now to save myself from hearing dissapointment when the actual time comes. So many people have really had strong opinions about this. But after some really careful thought, searching our hearts, going through Pros and Cons, Phill and I have decided that we very much want another baby. There are so many reasons, but it comes down to not wanting Asher to be alone. I love my brothers and sisters, each one of them represents one of the best parts of my life. I want my son to have that, I want my future child to have that in Asher as well.
That being said, I really don't want to be asked questions about Autism and our fears that another child will have it. The answer is yes, we worry, but we still think that life would be valuable and we cherish Asher. If you ask us that question, it will feel like a slight against our beautiful little boy, so please don't do that. We really don't want to field questions about statistics that a new child would also have Primary Immuno Deficiency and get any sort of judgement in that regard. That is why I am saying this now, so that when the time comes, we can have people just be happy for us like they would be for anyone else.
We've been trying for a while now without success and have moved on to fertility treatments. It could take a long time. Who knows. Whatever shall be shall be. And it is what it is. Hopefully we can all see eye to eye on that much.
Our lives have continued in the same daze of therapies, fighting insurance, and work work work. Just nothing dramatic. Asher started school, he loves it! He is on a two week break right now and cries for school every morning. I hope he loves school this much when he is older! The two week break has given me the opportunity to do intensive potty training, which was encouraged by the Autism Specialist he sees. He has been successful in many ways, but we've failed miserably in others...mainly in the poop department. Its okay, baby steps. Having Asher as my little boy has really taught me to be okay with taking small successful steps. Patience has never been my strong point.
Asher's language has really taken off! We do sometimes still see the differences between how he uses his language and how typical children use language, but I think his speech is in a pretty good place. The thousands of dollars spent on intensive speech therapy were the best dollars I've ever spent. I'd do it again in a heart beat. The older he gets though, the more clear the parts of him that are "autistic" become. For example, he is so damn rigid with his language.
This morning the house creaked and Asher said "Woah what that?" I told him "Don't worry the house is creaking" He immediately sprung up from the couch and said "Oh no my house is breaking!" I told him "No creaking! The house is not breaking!" He said "NO! Cracking! Is Breaking!" And he has been stressed out about it ever since. He walked up the stairs just now and came back down when he was just halfway up because a stair creaked and he didn't want it to break with him on it. I kinda wish I could go back and use a different explanation like "The house is just saying "Hi" to us" He wouldn't have understood what I meant at all, but he would have accepted that I gave him a passable answer and moved on with his day. Now he is stuck on the damn house breaking and it is driving me batty. I would be thoroughly annoyed if it wasn't for the fact that it is clearly causing him anxiety. I just have to sigh at this point, hug my little boy to reassure him every two minutes, and silently wonder to myself how long until he moves on from thoughts of the house breaking. I'm going to be so mad at myself if I'm still dealing with this in a week...which for us is a very real possibility!
In most ways though, he has just become more of a delightful little boy. He has so many interests and has really started to take of with imaginative play...its really fun to watch! This leads me to my last sentiments for a while. I know this will receive mixed reactions, so I'm saying it now to save myself from hearing dissapointment when the actual time comes. So many people have really had strong opinions about this. But after some really careful thought, searching our hearts, going through Pros and Cons, Phill and I have decided that we very much want another baby. There are so many reasons, but it comes down to not wanting Asher to be alone. I love my brothers and sisters, each one of them represents one of the best parts of my life. I want my son to have that, I want my future child to have that in Asher as well.
That being said, I really don't want to be asked questions about Autism and our fears that another child will have it. The answer is yes, we worry, but we still think that life would be valuable and we cherish Asher. If you ask us that question, it will feel like a slight against our beautiful little boy, so please don't do that. We really don't want to field questions about statistics that a new child would also have Primary Immuno Deficiency and get any sort of judgement in that regard. That is why I am saying this now, so that when the time comes, we can have people just be happy for us like they would be for anyone else.
We've been trying for a while now without success and have moved on to fertility treatments. It could take a long time. Who knows. Whatever shall be shall be. And it is what it is. Hopefully we can all see eye to eye on that much.
Monday, March 18, 2013
Telephone
Lately I've been feeling deja vu multiple times a day. I think it has something to do with the day in Kindergarten we learned about the game of telephone. I remember it being so much fun and how each time someone whispered in my ear I was convinced that go around we'd get it correct and prove our teacher wrong...we never did. The game of telephone isn't fun when it is no longer a game and you're dealing with adults who are completely inept at their jobs. But the result...exactly the same, a jumbled mess of meaningless information that is loosely based on the original message/intent....and it never gets to the person it should, when it should, and why it should. It is very frustrating.
The frustration a special needs parent feels on a weekly basis just trying to coordinate therapies and services for her child and figure out how needs to be paid what and when is unreal. Imagine having to wait in line at the registry everyday. Each time you make it to the counter with all your paperwork nicely filled out, you're told you have the wrong form, please exit the line, take this correct form and start the process again, just wait for hours, get back in line and to get to the counter and to be told yet again that you filled out the wrong form, please exit the line, fill out this form and so on and so forth....for months. But in our case it has been going on since Asher was 15 months old. Can you imagine over a year and a half or waiting in line at the registry? Over year and a half waiting on hold on the phone. You get the picture. And it is frustrating
So Asher starts preschool soon. A huge transition for him, for us, for life as we know it. We have just now really gotten used to the plan we have in place, begun to build a life around the complicated schedule of a child with Autism. It isn't easy, but we've done it because honestly, that is how much we love him and it has become the only way we can truly say without words that we love him that much, that life, our life, his life, that the Cole family, will make sacrifices that most families cannot imagine making, for one beautiful, sweet, loving, and broken little boy.
So I've been living on the phone. Living. Every second not spent driving in the car to therapy, participating in therapy, or the hours I'm at work (and sometimes even those) is spent playing telephone between service providers and my health insurance, service providers and the public school, public school and Early Intervention, I'm exhausted. I'm frustrated. I can see why some parents just give up. Of course I won't. I can't. I wouldn't be able to look my little boy in the face if I did. But I can see how it would be too much for some people.
I need a translator. My own personal translator that can sit on three way calling and translate every single conversation and provide me with an accurate transcript including original message, the intent, and next steps. Which is all really silly, because in what seems like another lifetime, although not terribly long ago, I used to be that translator for other families. Why is it that I can't translate effectively for myself. Good Lord, it must be that not only are the lenses of my glasses tinted with emotion, but my ears and the ear piece on my phone is as well.
Or it is just that I am dealing with inept people who work for a broken ineffective system. I don't know. What I do know is that my heart goes out to all the Mamas that have to do this without the support of a husband or loving extended family, for the women who don't have my amazing sister, or live in a state like we do that actually offers services, even if they are complicated to set up, for the women who don't work in the field that have to learn the code from scratch. For all my special needs Mama friends who look to me, as lost as I am, for answers....you guys are my heroes and the absolute best of what the world has to offer.
So tonight I'm putting down the telephone. I've allowed it to take over too much of my week already and it is alas still just Monday. And I think tonight I'll shut the phone off. So if you're looking for me, it might prove to be tricky, that is unless you know what to listen for. The very best baby/toddler belly laugh around. Follow that sound, you'll find me chasing my little boy, tickling his feet, building towers and knocking them down, maybe even playing one of our epic two hour hide and seek games. Sounds glorious.
The frustration a special needs parent feels on a weekly basis just trying to coordinate therapies and services for her child and figure out how needs to be paid what and when is unreal. Imagine having to wait in line at the registry everyday. Each time you make it to the counter with all your paperwork nicely filled out, you're told you have the wrong form, please exit the line, take this correct form and start the process again, just wait for hours, get back in line and to get to the counter and to be told yet again that you filled out the wrong form, please exit the line, fill out this form and so on and so forth....for months. But in our case it has been going on since Asher was 15 months old. Can you imagine over a year and a half or waiting in line at the registry? Over year and a half waiting on hold on the phone. You get the picture. And it is frustrating
So Asher starts preschool soon. A huge transition for him, for us, for life as we know it. We have just now really gotten used to the plan we have in place, begun to build a life around the complicated schedule of a child with Autism. It isn't easy, but we've done it because honestly, that is how much we love him and it has become the only way we can truly say without words that we love him that much, that life, our life, his life, that the Cole family, will make sacrifices that most families cannot imagine making, for one beautiful, sweet, loving, and broken little boy.
So I've been living on the phone. Living. Every second not spent driving in the car to therapy, participating in therapy, or the hours I'm at work (and sometimes even those) is spent playing telephone between service providers and my health insurance, service providers and the public school, public school and Early Intervention, I'm exhausted. I'm frustrated. I can see why some parents just give up. Of course I won't. I can't. I wouldn't be able to look my little boy in the face if I did. But I can see how it would be too much for some people.
I need a translator. My own personal translator that can sit on three way calling and translate every single conversation and provide me with an accurate transcript including original message, the intent, and next steps. Which is all really silly, because in what seems like another lifetime, although not terribly long ago, I used to be that translator for other families. Why is it that I can't translate effectively for myself. Good Lord, it must be that not only are the lenses of my glasses tinted with emotion, but my ears and the ear piece on my phone is as well.
Or it is just that I am dealing with inept people who work for a broken ineffective system. I don't know. What I do know is that my heart goes out to all the Mamas that have to do this without the support of a husband or loving extended family, for the women who don't have my amazing sister, or live in a state like we do that actually offers services, even if they are complicated to set up, for the women who don't work in the field that have to learn the code from scratch. For all my special needs Mama friends who look to me, as lost as I am, for answers....you guys are my heroes and the absolute best of what the world has to offer.
So tonight I'm putting down the telephone. I've allowed it to take over too much of my week already and it is alas still just Monday. And I think tonight I'll shut the phone off. So if you're looking for me, it might prove to be tricky, that is unless you know what to listen for. The very best baby/toddler belly laugh around. Follow that sound, you'll find me chasing my little boy, tickling his feet, building towers and knocking them down, maybe even playing one of our epic two hour hide and seek games. Sounds glorious.
Saturday, March 2, 2013
As Luck Would have it.
Throughout your life, people will tell you a lot that you are lucky. As a child you use the term positively "You are so lucky!". It took me a long time in my life to realize that there are two types of luck. Good luck. Bad Luck. When people say "You're so lucky!" They could be in fact commenting on the fact that everything bad happens to you. This is the way of my life. And it isn't me having a bad day, feeling awful for myself, it is just the facts. I look at luck through this lense. I was born to a poor family, I lived in the worst, most dangerous part of inner city Boston. They write books about the projects I grew up in. By age six I was being bounced back and forth between family members, and age 8 it was off to foster care. That was the start of my luck. I could mention that if an accident is going to happen...it will. I've been hit by a car, fire cracker back fired...exploded in my face, as a baby I fell three stories out a window. Hell lets starts with the fact that I was born at 27 weeks gestation. I've been in multiple car accidents. And if an illness is rare, I'll probably get it. If the side effects of medication are uncommon, I'll expect to see those too. It is just how it is. If I were a glass half full type of girl, I would say that my real luck in life is that I've managed to survive at all. Maybe.
All that aside I've been thinking a lot lately about the expectations I've had for my life. I certainly didn't forsee it going down this way. When I was a child, in the middle of a crappy childhood, I promised myself that as an adult, when I gained all control, that I would make all the right choices and that my life would be better. I promised myself that if I did anything right at all, I would make sure that my children were happy, had the best childhood, it wouldn't matter what sacrifices had to be made. Stupid promises. Of course I made them, so I am trying to realize them, but how naive was I? Seriously. As a child I knew nothing of things like Autism, the statistics, the effect it would have on our lives. If you had said oh 1 in 88 which means it probably won't happen to you, maybe I would have been smart enough to say "Well, crap, it probably will happen to me then, because everything happens to me" Historically speaking, its just how its been.
So of course, because the Flu can be gotten, we got it. I should have expected it you know? I feel silly that I didn't. When will I learn? But we got the flu, it happened. It was awful. I wonder for a few days there if we would even survive it. But then maybe that is the flip side of my luck...it drags me through hell and back but somehow allows me to survive. But we were very sick...bed ridden sick. Then Bam! Have some Pneumonia. Just for kicks and good measure. I mean why not? So its been two weeks of struggling to breathe. Pure exhaustion. Broken sleep. And I'm wasted from it. Asher hasn't seen one of his therapists in two weeks. He hasn't gone to school. Hasn't gone to gymnastics. Hasn't seen his Mimi or Grammy. He tells me he misses Emmy, and Zoe, and Mimi, and Deb, and Grammy. He cries in the middle of the day to call Daddy at work. Just to call Phill crying, saying "Miss you daddy, a love you" and make Phill feel guilty for going to work. This is how our two weeks have been.
And he has regressed. Sometimes his speech is barely intelligible. Meaning I can barely understand him. He is back to jargoning (think of hearing sentences that sounds like tigga tigga tigga right mama?". It is sad to watch and a sad realization that as luck would have it, Asher would be a child that experiences substantial regression in short periods of time without therapy. Awesome. Although really, whose fault is it that I didn't see it coming? My own. That dissapointment....it is my own fault. I let it smack me in the face, when I knew in the back of my head it was coming.
Last night Asher woke up for the fifth time, coughing and wheezing, saying he was scared. So I brought my baby to bed, I cuddled him close, I stroked his hair. And somewhere in my cloudy brain the Taylor Swift Song "Ronan" began to play in my head. If you haven't heard it, it is about a gorgeous 3 year old boy who died of cancer. Ronan's story has been close to my heart for a long time now. I often have to put away my thoughts of Ronan, because it makes me too sad. But last night, I thought of Ronan's Mom Maya while I held my almost three year old and couldn't help but think about my luck again. Really luck is in the eye of the beholder I guess. For all my bad luck. For all the crap that has happened to us. I was there, holding my little boy. Something I know Maya would give anything for. So I hugged him close and I fell asleep.
Last night I dreamed in painful detail of the car accident I had when I was 20 weeks pregnant with Asher. It was so real, like it was happening all over again. I could feel the panic. And that thought that played in slow motion as my car spun out of control, "there is no way my baby will survive this". Painful detail. I woke up with a start, sweaty and gross. And I lean down and kiss a fuzzy little head that is laying against my chest. As luck would have it, my baby has survived a lot. Even before he was born, he survived a lot. His luck it seems, looks a little like mine. Bad shit finds us, but we survive. I don't know if that is good luck or bad luck, or if it is just what it is supposed to be. But last night I hugged a baby I thought I'd never have. And for a small amount of time, I forgot about his Autism, his regression, his immuno problems, his allergies, I forgot about everything that makes him different, everything that has lead to a huge deviation from the life I thought I'd be able to give him. I hugged my lucky little boy. And just for a few precious moments I thought to myself. "You are so lucky"
All that aside I've been thinking a lot lately about the expectations I've had for my life. I certainly didn't forsee it going down this way. When I was a child, in the middle of a crappy childhood, I promised myself that as an adult, when I gained all control, that I would make all the right choices and that my life would be better. I promised myself that if I did anything right at all, I would make sure that my children were happy, had the best childhood, it wouldn't matter what sacrifices had to be made. Stupid promises. Of course I made them, so I am trying to realize them, but how naive was I? Seriously. As a child I knew nothing of things like Autism, the statistics, the effect it would have on our lives. If you had said oh 1 in 88 which means it probably won't happen to you, maybe I would have been smart enough to say "Well, crap, it probably will happen to me then, because everything happens to me" Historically speaking, its just how its been.
So of course, because the Flu can be gotten, we got it. I should have expected it you know? I feel silly that I didn't. When will I learn? But we got the flu, it happened. It was awful. I wonder for a few days there if we would even survive it. But then maybe that is the flip side of my luck...it drags me through hell and back but somehow allows me to survive. But we were very sick...bed ridden sick. Then Bam! Have some Pneumonia. Just for kicks and good measure. I mean why not? So its been two weeks of struggling to breathe. Pure exhaustion. Broken sleep. And I'm wasted from it. Asher hasn't seen one of his therapists in two weeks. He hasn't gone to school. Hasn't gone to gymnastics. Hasn't seen his Mimi or Grammy. He tells me he misses Emmy, and Zoe, and Mimi, and Deb, and Grammy. He cries in the middle of the day to call Daddy at work. Just to call Phill crying, saying "Miss you daddy, a love you" and make Phill feel guilty for going to work. This is how our two weeks have been.
And he has regressed. Sometimes his speech is barely intelligible. Meaning I can barely understand him. He is back to jargoning (think of hearing sentences that sounds like tigga tigga tigga right mama?". It is sad to watch and a sad realization that as luck would have it, Asher would be a child that experiences substantial regression in short periods of time without therapy. Awesome. Although really, whose fault is it that I didn't see it coming? My own. That dissapointment....it is my own fault. I let it smack me in the face, when I knew in the back of my head it was coming.
Last night Asher woke up for the fifth time, coughing and wheezing, saying he was scared. So I brought my baby to bed, I cuddled him close, I stroked his hair. And somewhere in my cloudy brain the Taylor Swift Song "Ronan" began to play in my head. If you haven't heard it, it is about a gorgeous 3 year old boy who died of cancer. Ronan's story has been close to my heart for a long time now. I often have to put away my thoughts of Ronan, because it makes me too sad. But last night, I thought of Ronan's Mom Maya while I held my almost three year old and couldn't help but think about my luck again. Really luck is in the eye of the beholder I guess. For all my bad luck. For all the crap that has happened to us. I was there, holding my little boy. Something I know Maya would give anything for. So I hugged him close and I fell asleep.
Last night I dreamed in painful detail of the car accident I had when I was 20 weeks pregnant with Asher. It was so real, like it was happening all over again. I could feel the panic. And that thought that played in slow motion as my car spun out of control, "there is no way my baby will survive this". Painful detail. I woke up with a start, sweaty and gross. And I lean down and kiss a fuzzy little head that is laying against my chest. As luck would have it, my baby has survived a lot. Even before he was born, he survived a lot. His luck it seems, looks a little like mine. Bad shit finds us, but we survive. I don't know if that is good luck or bad luck, or if it is just what it is supposed to be. But last night I hugged a baby I thought I'd never have. And for a small amount of time, I forgot about his Autism, his regression, his immuno problems, his allergies, I forgot about everything that makes him different, everything that has lead to a huge deviation from the life I thought I'd be able to give him. I hugged my lucky little boy. And just for a few precious moments I thought to myself. "You are so lucky"
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