Hi everyone. I’ve been pondering some things. Actually, I’ve been sort of obsessing about three topics, and have recently come to the conclusion that they overlap in a way that makes me more than a little uneasy. Yes, I’m crazy.
After Justin’s diagnosis we went through a series of emotional events: grief (which is cyclical and changes by cycle – more about this later), security, and questions. Lots and lots of questions.
Security relates to the feeling of relief at knowing what we’re dealing with. We know Justin can be difficult, but having a diagnosis is like being given a roadmap for the care of your child.
Grief – it comes and goes and comes… Sometimes I’m grieving the life I thought my son would have when I was pregnant with him. Sometimes I’m grieving my own loss as a mother. Sometimes I’m grieving for the life I thought I’d have as a parent. Sometimes, I’m just exhausted.
Questions – Questions about where Justin’s Autism came from. What does it mean for any other children we might have? All studies point to other studies and so on and so forth. It’s a rabbit hole. As I’ve discussed before, I have come to a few conclusions about the causes of autism: the genetically loaded gun with a variety of mostly unknown triggers theory. It is what these triggers might be that gets me into a fuss. I know that Justin had that genetic predisposition – his dad is practically a poster boy for undiagnosed Asperger’s Syndrome. Justin, however, does not have aspergers. He has full blown Classic Autism. Now, we are fortunate that he is verbal – meaning he has words. They just happen to be 99% nouns (eg. bottle, chalk, panda, momma, dadda, etc.). He can use them to communicate wants or needs. We are primarily tools to him. He loves us and apprecates us in his own way, but for the most part it is our job to facilitate his play. He cannot occupy himself without us – a strange predicament for the parents of an autistic child, I know. We are the pencil for his paper, the button that makes the game work.
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I often look back, and wonder what I could have done to avoid Justin’s autism being as severe as it is. Some parents point at vaccines, or some other regressive event. Justin was our autistic Justin at birth, and quite possibly before. Most of my friends know that shortly after discovering my pregnancy with Justin, I got pretty granola. Justin was totally unplanned – he was conceived while I was on birth control. I seldom drink anyway, but as soon as you’re pregnant you think, “Dear God! What about that one martini I had a week before I found out I was pregnant?!” And the docs and OB’s and midwives just kinda shrug and say, “Well, there’s not much you can do about it now. Just focus on what you do have control over.” Yeah, that’s reassuring. But to be fair, what else could you say?
Anyway, in my adult life nothing has been so painful emotionally or physically than Justin’s birth. Justin’s birth story is posted here on this blog site. He was formally introduced the day after his birth day. Then, with my posts on our nursing story, I’ve shared more. To be honest, until now I haven’t had the courage or strength to talk about what his birth did to me, to my heart, or to my mind. I had planned an out-of-hospital birth center birth, but when 14 days post-due date rolled around I was sent to the hospital for induction. I tried to keep my cool. I took advantage of the tools I was given in my Bradley birth class, my husband, and my doula. My parents surprised us with coming up Tuesday evening – they stayed for the induction and birth the following day. With the intent to have the most natural birth I could given the circumstances, I fought like hell. I was told at the outset that they would start the Pitocin, then check after a few hours, then cut back or off the pitocin once my body took over. That didn’t happen (the backing off of the pitocin – they didn’t give me a chance to show my body was doing anything other than being a chemical puppet). They broke my water after 3 hours of Pitocin. 2 hours later, I was headed into transition but started vomiting from the intensity of contractions (I expected this a bit, it was transition after all) but after 3 hours of vomiting (you’d think they’d go, “hmm, maybe she’s not responding well to the pitocin.”) I was dilated to 8cm and finally gave in to the offers of an epidural. I had the wherewithal to tell them absolutely NO narcotic with the epidural. I’m grateful that I did that, since Justin’s initial APGAR was so poor (it was a 2). Looking back I wonder, why the hell they didn’t listen to me telling them to back off the pitocin?? Fast forward a few hours of hard work, and then a poorly managed labor got much worse. Poor positioning and a stem-to-stern episiotomy, and a then a slick manuver (to this day, I have not found any medical literature to name or identify the method he used in lieu of forceps – I call it the butt-pull: he reached up my rectum, grabbed Justin’s chin through the wall of my rectum - much the way you pick up doggie-doo from the outside of a trash bag – and pulled him down) by a doc I didn’t know and was never introduced to (I had to have colorectal surgery 6 weeks later to repair some of the damage) . A short while later, Justin was born in respiritory distress, with all the signs of Pitocin syndrome (low initial APGAR, broken blood vessels in the eyes and face - which I had too, by the way -, he even had one eye that appeared smaller than the other for months, and of course the respiritory distress).
The two of us were a wreck. Justin was whisked away after a 60-second meeting with his mom to the nursery, where my dutiful husband followed, I didn’t see my parents again until the next morning. I was left alone, in the dark, in the room I’d given birth in, for between 2 and 3 hours. I never saw or spoke to any of the staff from Justin’s birth again. I had one visitor, a friend from Church’s husband who was an L&D nurse who was about to clock on for his shift. He stayed for 2 very awkward minutes, as I’m sure I looked like hell. I am grateful for that visit. Justin was born at 11:14pm on Wednesday night. We were discharged together on Friday afternoon. I could barely walk and still needed assistance to shower. The next two weeks were the loneliest days of my life. We had a few visitors – mostly in a hurry dropping off food for which we were grateful. In my heart I begged for phone calls, and visits from people who I could actually talk to. Mostly, I was told in more ways than one that yes, my birth was hard, but that I should be happy because I had a healthy baby. Well, I wasn’t happy. And neither, as it turned out, was he healthy.
In my obsessive medical journal reading, I’ve come across multiple studies that show that somewhere near 60% of children with autism had a difficult birth that included pitocin. Some new studies are using out-of-hospital birth center and home births as a control group. Preliminary results are showing that the control group, the group not exposed to excessive IV fluids, routine pitocin augmentation, epidurals, etc. is completely void of later incidence of Autism diagnosis. While the current data shows that in the general population (which are born in the hospital system) has a steadily increasing incidence of ASD diagnosis.
That being said, as a family, we’d like to try for another child. It’s no guarantee that another child won’t have Autism. I know that. At this point, we know sorta what we’re getting into. What know what Justin is, and we have some ideas as to triggers. Justin does so well with other children, they really do have a natural ability to make him communicate and interact. And I’ll admit it: in my heart of hearts, I want a do-over. A chance to heal emotional wounds. To go in ready for battle, to stick up for myself and my baby.
We’ve been trying to get pregnant for 4 months and counting. Still no luck. Enter obsession number 3: Infertility.
As far as infertility goes, here’s the short list of stuff in our favor:
1. I conceived Justin while on birth control.
2. I’ve lost a bit of weight with diet and exercise.
Here’s the short list of stuff NOT in our favor:
1. I’m 30, dear husband is 34. Not old, but old enough that it can make it a little more difficult to conceive. Especially since we’re racing the clock against the whole older-parents=higher autism risk thing.
2. I was on and off Depo for 2.5 years, a total of 4 shots. Kind of the silver bullet against pregnancy. Can plague those trying to conceive for up to 15 months or more after last shot.
3. Thanks to our dear son’s tantrums at the age of 2, dear husband is now short one of his boys.
As Orthodox Christians, major infertility treatment is not an option. And given my current belief that intervention, chemicals, n’stuff may well be the triggers to the genetic predisposition gun, I don’t wanna pull those. So here I am. Charting basal body temps, mucus, and taking my vitamins and a few herbs (like Chaste berry). I was on and off hormonal birth control for about 15 years. The longest I was ever off was a week or two. Maybe a month at most.
My obsession diagram is beginning to look Venn in nature.

Holy crap! No!!! So this week, I’ve discovered that my three obsessions are painfully intertwined. “So what?” you may ask. Doesn’t that just mean you’re thinking through things in a meaningful way? Perhaps that is the case. Ultimately though, I’m horrified to discover that I can’t take a break from one obsession with another because I’ll ultimately end up fixating on it again – just from a different perspective. GAH! I wish I could just put my fingers in my ears and yell, “LA LALALA!!!”. I know too much, and yet, not near enough to feel confident and secure. I suppose this is where prayer is supposed to come in. Prayer and seeking out good counsel. Anybody out there know some good recommendations for counsel about this?
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