Chutes and Ladders

When I was little I loathed the game Chutes and Ladders. Every time I began to progress forward, that damn slide would come up and bite me in the ass and send me spiraling back down to where I started, or worse left me further behind than ever before. I've always hated that fucking game. And yes I just swore. That is how strongly I feel about it. The worst part of that game is that there are more slides than ladders, why?

Much like the game, life with Asher has been an almighty struggle up those damn ladders, just to be tossed back down again. Sometimes the regression is small, sometimes it brings us back further than my mental wellbeing can handle.

We're having a summer of slides. As in, we're really struggling with Asher. I know this is part of it, but knowing that, never makes the sliding backwards easier. The knowledge that the regressions will happen, looms over you like a dark cloud, even in the good times. It is always there. You'd think that it would prep us for when the whole sky turns grey and opens up in a cold wet downpour, but no, we are still cold and wet.

The ramp up to this happened slowly. It started with Lola being born and the end of the normal school year. We were away from speech, OT, and Farm therapy for a while. School closed for the summer and a very abridged summer school began. And Boom! Good bye consistency.

You could feel the pressure building, so much so, that Phill and I actually fought over going to the fireworks. From the first uttering of his diagnosis, I have sworn up and down not to hide Asher from the world and to go out of my way to include him in normal life....which includes celebrations. I'm slowly ebbing away from that resolve, but dammit Asher deserved to see the fireworks.

So I brought him. Phill stayed at home with Lola and I brought my little guy to the fireworks, knowing full well that the fireworks by nature of what they are, are a sensory overkill wasteland waiting to happen. I brought him anyway, because I am too proud not to and more selfishly, there is a part of me that dreams of watching my child experience things as a normal child would, maybe this would be his moment.

The reality of how this all went down still plays through my mind. We met my sister, brother in law and Asher's cousins. The kids were all really excited. Both boys were overstimulated from the start. Like a real cheapie, I stocked up on glow sticks and swords from the Target $1 section so we wouldn't have to buy a $15 substitute when we got there. Of course, swords for the boys, hindsight really, just a bad choice. Because those damn swords.....I was poked in the eye twice, Michelle once, and Kylee jabbed in the side of the neck. Bad choice Mama, bad choice. I suppose they were marginally better than the seizure causing, light fests in a tube that other children were wielding...but I digress.

We got there early, because otherwise, NO SEAT FOR YOU. I hate getting places early with Asher. The anxiety caused by anticipation on both our parts is just agony. I was constantly aware of Asher's place in space, but part of my mind I allowed to wander and scope out the scene. The scene in front of me of other children, sitting on blankets, patiently waiting for the fireworks to begin, chatting with siblings, laughing with parents. Asher?..... shit I blinked, where the hell is he?!? Asher was so stressed by all the people, that I had to take him to pee 4 times in the 30 minutes we had to hang out before the first boom lit up the sky. 4 Times. And no we couldn't wait in the crazy long line for the porta potty each time. People in line rolled their eyes when I walked by them for a third and fourth time, leading my child to the wooded area so he could pee. Suckers, you've been in line for 30 minutes.

And this is pretty much how it went down, Asher overstimulated, me holding him down to calm his body. He needs to pee. We come back to the blanket, he is calm for two minutes. He gets up and runs off, I find him, he has to pee....rinse and repeat. It was exhausting. And meanwhile, I am acutely aware that I'm one of the only moms there having to do this. And then even worse, I'm thinking "crap Phill was right, this is going to suck"

So the show starts. We sit on the blanket, I have Asher wrapped in my arms and legs tightly, and I snuggle in close to him. I watch as the colors in the sky play across his face and I wonder for maybe the millionth time how he sees what is in front of him, how his very special brain is taking it all in and experiencing it. And I also wonder, who is getting the short end of the stick...him? Or maybe it is the rest of us. Boom boom....and I whisper in his ear, "did you see the red one and the one that looked like a smiling face?" and he tightens his hand around mine twice to say "Yes" but no words. But he is entranced with the exploding energy in front of him, I could feel the energy in his body and wonder again what is it like to actually live in Asher's body. But still in all that, I see the wonder of childhood in his eyes, the happiness, the memories forming, hopefully happy memories of a time he came to the fireworks with his Mama. Hopefully he remembers me being loving and patient. Hopefully he remembers me smiling too.

In the past 4 weeks since then, summer has just sort of gone down hill. We decided to throw him a late birthday party since I was way too pregnant in April to even consider it. The party itself went well. He played with others and seemed to have fun. Except he decided he couldn't handle anyone singing Happy Birthday. And you know, at the time I didn't think much on it, but that was the start of his auditory tolerance breakdown. Since then, every time the baby cries, you see him crawling out of his skin. It is almost like her cry hits him somewhere in his central nervous system and slowly tortures him like the scream of a banshee or a slow dragging of nails across a chalk board. And to boot, Lola is teething, so she cries a lot. Sometimes he cries too because he just can't handle. But most often he screams "Stop Crying" or he'll try to make louder noises to drown it out. The hardest for me to watch, is when he rolls on the floor crying and covering his ears. It makes me sad.

And sleep? We thought it would be the baby that kept us up all night and tortured us with good old fashioned sleep deprivation. But no, she wakes every few hours to eat, but like a real easy baby, goes right back to sleep. Asher? He can no longer sleep for more than 2 hours at a time. And it is really draining me. Every night, he crawls into bed with us at least 10 times. Each time we walk him back to his bed and take turns snuggling him until we think he is asleep...only to find him in our bed again not long after. We used to give up and let him stay with us, but he isn't sleeping even in our bed anymore and he tosses and turns and kicks and flails. He is like a zombie child during the day, he even has dark shadows under his eyes.

So we've upped the melatonin and come to a dark enough place once or twice, where we've been tempted to give him Benedryl....but no we haven't gone there. We always promised we wouldn't drug him. I think about things like Trazadone all the time. I took it for insomnia as a child. I don't know. I hate these decisions. I want to make the right choice for him, not do what is easiest for us. But this slide down, it has been long and steep....I'm exhausted. And the kicker is, as much as I want out of the downward spiral, I know climbing that next ladder is going to be HELL. I'm tired. But we move on. Eventually someone wins this fucking game right? Historically speaking, it has never been me, but hey...stranger things have happened, so I'll just keep rolling the dice and see where it takes us. Hopefully the next roll brings on a great school year, progress with ABA, speech, OT...maybe some new friends, a breath long enough that allows me to enjoy my baby before she is no longer a baby. Even if the roll just brings us to an in between space, the consistency would be nice, I'm really starting to miss that in our lives.

.

A quiet moment

I had to wait for some downtime to write this. It is silly really since we've already shouted to the world via FB that our little girl is finally here. Oh well. For some reason I only ever head over here to write something about Asher or Autism related. But this started as a family blog, so it only feels right to include Lola.

Lola Aisling Cole was born on May 15th at 10:21 in the morning via scheduled C-section. She was 7lbs 10oz and 20inches long. She came into the world making odd animalish sounding noises that were super adorable, with a head full of almost black hair, and looking just like her daddy.

When Asher was born and they handed him to me, I was in a fog. Of course I loved him immediately, but I wasn't in love with him. That feeling of just instant adoration and intense baby love didn't wash over me right away. I loved him, I was happy, but it wasn't what people told me it would be.

With Lola however things went a little differently. First off, I didn't get to hold her because...well...C-section. I had to watch Phill hold and snuggle her while I violently shook on the table. But what I could see of her was amazing adorable. And I was a little jealous.

In recovery when I got my first snuggle and real good look at her, I was immediately bonded to her. I was full of giddy baby love, didn't want to give her over for anyone to hold. My daughter, My Lola. It was surreal in a way because after we lost Elisabeth, had such a difficult time conceiving and delivering Asher, and multiple miscarriages afterward, well it felt like I'd never have a daughter. I had lost my daughter and now had a son. But she is here and she is gorgeous and she in mine.

Sometimes I look at her and listen to her baby sounds....which are definitely more feminine than Asher's were, and I wonder if this is how Elisabeth might have been if life had been different. Would Phill have held her the way he holds Lola? Which is different somehow than he held Asher. He is smitten.

And speaking of smitten? Asher Ben. He loves her. We were really worried that Asher would resent her. But instead all day long he tells us how much he loves her, how cute she is, and how sad it makes him when she cries. Having a sibling has already been good for him. When she cries he tries to comfort her, he pats her head, rubs her belly, and tries to give her pacifier back. Sometimes if she isn't in her swing or bouncer and one of us isn't holding her, he will frantically search the house for her. He comes back crying and saying "Lola is missing" Poor kid, she is just in her bed napping. And then he gets mad at me and tells me Lola needs to be where he can see her. Those moments are great for getting him to understand how scared we get when we can't see him or know where he is.

When Asher came into our lives, he came in with a loud crash. My whole life changed and it all revolved around this very sick and demanding baby. Asher was all consuming. Lola came in quietly. She has just sort of become a fixture in our home, almost like she was always here. Nothing much has drastically changed...well except my sleep pattern.

And here we are. Six weeks today. How did that happen? I mean wasn't she just born, but always here at the same time? Six weeks. I've already put away newborn clothes and sold off her newborn cloth diapers. It is way more bittersweet this time. Every time something ends I hear a soft whisper in the back of my mind and heart saying "Last baby" My last baby. God I'm desperate to enjoy every last second of her. This is the last time I'll get to have these "firsts" and if I blink or get preoccupied with life, I might miss something. And I don't want to miss any of it.

There really is so much more yet nothing really left to say. She is here. She is beautiful. And the Family Cole Slaw, is finally complete. When I look at my kids together it is so hard to remember back to the time when we thought we'd never have a baby of our own. And look at us now. Life is funny that way.

Everyone is a Critic

I've put off writing this entry for a while. Mostly I wanted to wait for a week where I wasn't judged by another parent, professional, or stranger. It was over two months ago that I made that decision. Two months. Sad right? It’s been over two months since I've had a judged free week.

One of the things you learn early in parenting, is that somehow just being pregnant makes you public property in some manner. People feel they have rights to opinions about you, be it your appearance, the decisions you are making for your baby, and what you should be doing if you're not already doing it...differently, more, not at all...you name it.

Everyone is a damn critic.

This doesn't go away when you have a special needs child. In fact it gets worse. The sad thing is that it isn't always meant with malic, I think in most cases people's intentions are good. I'm not sure what that says about our society, maybe a topic for another post down the line. People judge and they do it without knowing they are doing it. And TRUST. I know I am not immune to this. I am a flawed person, maybe more flawed than the next.

But being on the receiving end of it so consistently has given me some awesome fodder for reflection. So here are my thoughts

I split my life into my critics. There are several groups. Let us dissect them.

I have some wonderful friends. I split these friends further into my "IRL" in real life friends and my "e" friends, the wonderful people I've met in mommy forums, special needs support groups, and so on. I could further dissect these groups, but for conversation sake, let us just keep it simple.

IRL I have friends who look at Asher and say "I don't see it, I just don't. I believe that you think he is Autistic, but I don't see it" or "He isn't that bad, he looks like a regular 4 year old to me" or even better "Every kid has bad days" Except you just witnessed a good day for him. While these comments are meant to be supportive and kind, they aren't helpful at all. They just make me feel more defeated. I need my friends to understand how hard this life with this little boy can be sometimes, shoulders to lean on. I can't lean on them if they don't believe me, they won't support me if they think I'm exaggerating a very real and sad problem that takes over my whole life.

Sometimes I feel like I have nothing to talk about with these friends, when they used to know everything about me. Partially because I don't think they want to know this part of me and partially because while they don't know it, the look on their face when you talk about things like OT, Speech, and ABA is riddled with judgment. Like really "Why can't you just let him be a kid” Awesome.

I have a very small handful of e-friends that get it. These ladies know who they are. I love you guys, I do and I love our group. But the rest of my e-"friends" and I use that term loosely to describe a relationship with a group of women that have been together online since we were pregnant with our first borns, some of those friends have been downright hurtful with their judgments. At times it is hard to remember why belonging to this group ever seemed important. Oh because once upon a time we all just had kids who were the same age, they weren't differentiated by NT (Neuro Typical) and SN (Special Needs) I feel like most times I have nothing to share with these women either. While they debate things like Disney's new SN policies and see no harm in it, myself and the other "handful" of SN mamas are lurking in the back ground drowning in unfair judgment and choking on the opinions of others. And they don't get it. No one sees how these "little debates" can be so isolating and marginalizing.

Once way back in the dark days when I first got Asher's diagnosis, I had one of them call me out and say that they didn't believe Asher was autistic. Why the hell on God's green planet would anyone ever lie about something like that? You don't get cool kids points for having a disabled child. What a dark time for me. I was so upset by this women I would never meet and should have no care in the world toward her opinion, so upset that I actually scanned in my son's diagnostic medical documents and posted them online. So low of me. I don't know how or why I was in a place that someone's judgment could get me to such a place. It was almost pathetic.

But I have other critics and these critics have the ability to hurt me and my son a lot more. These are the critics that have too much pride to admit one of their own could be broken or imperfect in some manner. Yes family. I just want to say that I have some wonderful family members who are nothing but supportive. But there are others who look at us and say things like "there is nothing wrong with him, grow a back bone" "why does there have to be something wrong with him, why can't you just enjoy him" "why did you have children if you were going to let some quack place a label on him” or my very very favorite "I believe that you think he is Autistic” Sigh. Also not helpful. Not for Phill and I and certainly not for Asher. We have one person in particular who flops back and forth and by that I mean we are damned if we do damned if we don't. She will say things like "There is nothing wrong with him, you're just not parenting with a firm hand, he is a brat” and then ten minutes later when Asher is having a sensory meltdown and Phill is holding him in the other room to give him sensory feedback, will look at us and say "That is terrible, he is just a child” She who shall never be named is so lucky I hold my tongue more than I let it fly free.

So I spend half my time hearing about how people don't understand it or see it and then I spend the rest of my time being judged by the people who do. I'm either doing too much for my son or not enough. Let me explain.

So my friends think Asher is milder than he is, they don't see the things that worry us and think we are crazy for the amount of therapy we seek out for him. I'll include well intentioned family members in that group. Then there are the therapists. The people who do see it. But suddenly when talking to them 30 hours a week of OT, Speech, ABA, Hippotherapy, Social Group....it just isn't enough and why aren't we doing more?!? What do you mean you want some time for him to be a kid?!? OMG he has time to be a kid when he is out of this most important developmental stage. Have you considered medication for your child? NO? You're too biomedical? Have you considered fecal transplants? NO?!? You're not biomedical enough! You suck! You're choosing wrong!

I love even more sitting in school meetings where I try to explain what my son is actually capable of and I am told that he is so much more severe that I think he is. Wait a minute, back up....everyone in my life tells me I'm seeing things, he is fine, nothing wrong with him. And you, you sit here and tell me that my son is so severe he can never be in a regular classroom with normal kids, not just for his own sake, but for the sake of other children as well. He is so impaired he can't be taught to sit in a circle for morning meeting when a fucking dog can be trained to sit just because you tell it to? You're telling me that no matter how I try to advocate for my son, I'm wrong.

So many critics. As part of my non mommy self, I take on clients for advocacy. I actually sat in on a meeting where the school district in the span of five minutes told a mother that she should get her child involved in more activities and that she wasn't doing enough, but then just minutes later told the same mother regarding the same child "Shame on you for forcing her to do activities that cause her anxiety” For Suck Sake people. You'd think this mother was Hitler for signing her daughter up for dance lessons (Which said child loves btw) Why? Why would they do that? Because in once sentence in benefitted them to say mom wasn't doing enough and then in another it benefitted them to say she was doing too much.

So I say fuck it. Seriously. Fuck it. There are too many critics and everyone is on the extreme left or right. How about joining the real world here, that just happens to be somewhere in the middle? Is my son typical? No. I'm sorry friends I know you love me, but your denial hurts me. Is my son so disabled he can't be around normal kids? NO. I'm sorry well intentioned teachers who really do have Asher's best interest at heart, you wanting to protect him from the world and holding him to no standards, hurts him, it hurts me, and it hurts our family.

So I'm saying NO. You're all wrong. Society is wrong, the professionals are wrong, even those who love us are wrong. I'm so sick of listening to people talk about my son and seriously sitting there trying to figure out who the hell they are talking about. Surely not the skinny tall dirty blond four year old with huge blue, green, brown eyes that I tuck in every night. Not the same little boy that I put in time out forty times a day, redirect on the playground, snuggle and watch movies with, laugh with, cry with, be silly with, cry over when he is sleeping and can't see me. We're not talking about the same little boy, none of us. And we're not talking about the same me either. I'm not over exaggerating my son, I'm not under exaggerating him. I'm not putting him through too much therapy or not enough therapy. In truth our normal is just different than yours. You want a say in that? Too bad. I don't care for your say, unless it is 100% supportive and loving and transparent, unless it is absolutely free of your judgment. And it rarely is. Rarely.

Value

We are taught growing up that certain things hold value. I'm not talking about monetary value, although I'm sure that could apply, but milestones, achievements, goals, things that make up your value. I grew up differently than most people. I grew up away from my own family, but for the most part an outsider to the families that I did grow up with. Growing up in foster care is complicated. It may seem simple enough to the outsider, oh okay you didn't grow up with your family, but it isn't that simple. It means that forever your values, outlooks, spiritual beliefs, traditions you chose to pass along, those are hodge podged, things you've collected along the way, a little from this family and a little from that. People look at you and say, "oh you're Jewish, no wait, you're Christian" Myself I like to think I strive to be a good person and those titles don't matter. But they come up over and over again.

So value, I mean the value that floats between tangible and non tangible. For me this meant college. I didn't grow up in a family that said "You need to go to college" quite the opposite actually. I grew up amongst people that didn't hold those high expectations for me. I'm not pointing fingers, just the families I've lived with didn't even hold those expectations for themselves. But this attitude fostered in me a drive to find meaning in my education. It was very very important to me. During very difficult years that included 7 different high schools, I forced myself to pull it together and earn good grades. It wasn't easy. It wasn't at all. High school in many ways will always be my greatest achievement. And that is sad. Super sad. But college was the goal and I told myself that this was a very important part of myself. I went to college, I had a degree. And that degree lead to another degree. And I became the first person in any of my families to earn a Master's Degree. But it wasn't just any Master's Degree, it was a specialist's degree....and that held immeasurable value to me. I told myself, this is who you are and no one expected that of you, no one thought you could, not in a million years. And then at 26 I was accepted into a doctoral program, and that held an unreal amount of value to me.

Only life takes you on different turns. Instead of a Ph.d I chose to raise a teenager, something that held a different kind of value...in many ways a much more important value. After all, this child was so much like me, who I had been, and I thought that if I did everything right, gave her all the advantages I had, taught her how to use certain tools, well I could help her find the "value" I had discovered. I used to be so stupid. I was the smartest stupid person I'd ever met. So book smart, so street smart, but so interpersonally stupid. In trying to make better for this little girl, I was really trying to save the little girl I had been, which is also incredibly sad. And in the end, after all that effort, I'm not quite sure it helped either one of us.

But slowly my ideas on value began to change, I didn't dismiss my education, it was still an important part of who I was. I looked in the mirror and I saw a very intelligent woman, someone whose skill was extremely valuable in her field. I saw someone who could teach the unteachable to read, someone who had something to offer. It made me feel valuable. The sad part is that I never felt valuable just by virtue of being me. No one had ever told me that I was.

So life moves on and I look in the mirror and now I see myself as someone's wife, Phill's wife. I am a good educator, a loving wife, a great friend and sister, and now I'm an aunt. And that is who I am. And I feel good about that value. And then I am pregnant, I'm almost a mother, but not yet. But my identity is changing slowly. Still I held onto the importance of being Holly Cole, a reading specialist, a special educator, a damn smart person. After all, many are blessed with charmed childhood's, those gifts that I have never experienced. For all the bad I'd been given, I have never once taken for granted that I was given the gift of above average intelligence. It was so important to me. My brain was my value.

So Asher came along. I expected to look in the mirror and see my value grow. I would see Holly Cole, a loving mother, a wife, a great friend, the world's best auntie, a smart woman who indulged in brain research for fun, a prolific reader, and a progressive teacher. In reality I saw a struggling mother of an infant who was very ill. I was too tired to be a good wife, I became an unattentive friend, sister, aunt, I couldn't work, I was no longer an educator. And that brain research? No, it was replaced with immuno disorder research. And Asher became the only thing of real value in my life, and he was broken. I know people see me in a better light than this and I'm sorry to burst bubbles, but the truth is...I was incredibly depressed. I had no idea who I was anymore. And nothing was about me, I lost myself. I became the least important person in my life, the last person I considered, and everyone suffered for it. I lost my value.

Slowly life with Asher became easier. We learned how to manage PID, we learned how to cook for many many food allergies, we figured out the medical food game and there was more time to be a friend, mother, wife, aunt. I remember emerging from the fog and looking at my nephew and realizing, I didn't really know him that well, for all his six months on earth, I wasn't that close to him, not the way I wanted to be, not the way I was to his sister. I had been unavailable for too long. I went back to work, I felt good teaching kids to read, I started up my brain research again, I debated with coworkers the merits of research based phonics instruction over whole language methods. I felt smart again. And yippee...I brought money into my household...what a concept. I looked in the mirror and I saw these things. And I felt valuable again. It was nice....while it lasted.

Somewhere between 16-18 months for Asher, that picture started to become distorted again. Starting with the day I walked into a room and my son didn't look up. I kneeled behind him and screamed his name, he didn't startle, he didn't move. I banged pots and pans, nothing. Oh dear god everything went blurry...the picture started to acid peel away, it fizzled as it went, taking my sense of me with it. Then we dove into unknown territory. I looked in the mirror and all I saw was Holly Cole Autism Mama. Everything else that I had deemed so valuable and important was gone. I became again, the least important person in my life. My real value lying in what I could do for my son.

I couldn't work, which means we lost my income and suffered financially. Someday I'll write a blog about that, because it is unreal what having a child like Asher does to your financial security. I no longer had the means to pay on my student loans, loans that had paid for my precious education. I couldn't work, not if I wanted to get Asher the services he needs, keep him in the school program he needs, make the most of this most important developmental time period. And I'm not a martyr, I'm not an amazing mom, I don't have super strength, anyone one of you reading this would do the same thing. You'd do it. You just don't know it yet. I hope you never need to know.

And that is where we are. Only I look in the mirror now and I see Holly Cole, Asher's Mom, Autism Mom, Phill's wife, Lola's Mom. Now I think a lot more about my value, I'm reassessing. I can't stand before you and say that being a mom makes me super valuable, that is a smack in the face to every woman who longs to be a mother and can't. I can't say that an not take our sex back several generations. I won't stand before you and say my children are the best gift I can give to the world, little heroes just by existing, the bright lights that give my life any and all meaning it needs. Much like growing up in foster care, it isn't that simple. I love my son and I will love my daughter, I already do. But I love myself, I have to in order to be a good friend, a good wife, a good person, those things I also find quite valuable.

And I don't have answers. But I know that many of those who read my blog are special needs mamas and I know from conversations that we are all struggling with our value. It is a concept that is evolving slowly for all of us. And maybe my value on this Earth will never be tangible, maybe it doesn't need to be. And maybe my only real job is to not lose myself. I guess I just haven't figured out how to do that yet.

The Heart of the Matter

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.

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.