I remember sitting on a therapists couch several years ago and being told that when I speak I need to get to the main idea quicker. Too much of what I say has meaning, like every single word. Most people have a hard time processing that much information. My homework? Get to the heart of the matter. This is something I've been working on, but as you know...I'm wordy.
With Asher there has been so much information thrown at us, so much to update and tell. It has been hard getting down to the main idea. I'm not even sure what it would be. Describe Asher's issues in three sentences? That would take me longer to write than a paper. Seriously. I'm not sure which facts are more important than others, what is something to leave out, gloss over, not mention at all.
With our new baby, it has been more of the same. I haven't been sure what people would care to know, need to know, so I haven't really shared anything. But it might be time. And forgive me if I leave out information because I am going to try to keep to key facts.
So for the first time even, let me share that this pregnancy started out as a twin pregnancy. I'm sorry I know I haven't really shared that. Early on one of the babies stopped developing and instead of vanishing or being reabsorbed, the "debris" hung around and became almost like tumors hanging around in the viable baby's sac. Pregnancies like this one have less than a 50% chance of making it passed the first trimester. But we did. The "debris" is slowly being reabsorbed over time, but there is a chance that when baby girl is born, she may have some extra baggage. Nothing that we can see so far on ultrasound though.
We shared when we found out the gender that we are having a little girl! What we didn't share is that we had to go back three times for our anatomy scan. At first we were told that they just couldn't see her face, that she was being stubborn and we couldn't get her in the correct position. The next week we were told that they saw something. Key fact: Our baby has a heart defect.
There are a lot more details and things that feel so important, but I'll leave it at that. We've had worry of course, but we've learned with Asher to remain calm and balanced and roll with things. After all there isn't much we can do. We've got this no matter what. We'll do what we have to.
Yesterday I met with specialists, had a follow up ultrasound and fetal echocardiogram. And while the news isn't perfect, it is still good. They can still see the heart defect, but somehow in the three weeks since they last looked....50% improvement! Not perfect, because perfect would mean no heart surgery ever, but still good news. Baby girl will not need surgery the day she is born, like we'd been told might happen. She may even be able to avoid it in the first year. And that would be even better news.
So why share now since things are good? I didn't want to share our doom and gloom...we don't want to be that family. Of course people will want to know after the baby is born why she is fragile, prone to illness, why we say "Please use some of our hand sanitizer if you want to hold the baby" lol. I don't want to explain myself later. But mostly I wanted to tell everyone that I finally figured out the heart of the matter, I had some help while hashing it out and getting feedback, but the heart of all of our matters, every trial and tribulation, every problem that we choose not to get us and meet head on, the heart of all those matters is that our life while not perfect, is still pretty good. Just like Lola's heart.
Oh and baby girl has a name: Lola Aisling. That is your reward for reading a non sappy, to the point, nothing too interesting post.
Wednesday, January 29, 2014
Tuesday, January 21, 2014
Breaking News
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.
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.
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