My Hard Truth

Before I spill my guts here today I want to make sure you understand something from the very beginning: What I’m going to talk about speaks solely to MY experience as a mother who’s lived with antenatal depression and PPD and who has a child with developmental delays and is on the autism spectrum. I can’t speak for other women and their experience or how their illness-treated or untreated-may or may not have had an impact on their child’s development. I’m choosing to share this because honestly? I’m having a hard time processing it on my own. I don’t have a therapist to talk with about it right now, and keeping it all to myself is only allowing shame to breed ugly thoughts and emotions; thoughts and emotions I definitely don’t need right now considering I have a family to take care of, am currently off of 2 of my meds until my 2nd trimester, and I have a new baby growing within me. This is how things have played out for us-I’m in no way claiming this is how it will play out for others.

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11 months ago, I wrote a post about Alex’s 2yr well visit and how his pediatrician at the time had expressed his opinion that the developmental delays we were concerned about were linked (at least in part) to my untreated antenatal depression, PPD & anxiety. You can read it here; doing so will give you more context.

When I wrote that post I was hurt, wracked with guilt and defensive. I was confused-I didn’t know what to make of what he had said and I honestly didn’t want to believe it. I didn’t want to believe it because I was afraid to. Allowing myself to acknowledge he may have been right would’ve just ripped the band aid off of the wound I had worked like hell in therapy to stop bleeding.

But like I mentioned in my post last year, I had read the studies, the articles, what the experts had to say about untreated depression in mothers and it’s effects on their children. I had read the stats about low birth weight and premature labor and caught my breath every time, knowing how small he was, how I’d gone into labor 3 weeks early-but I secretly hoped he wouldn’t “fit” the others about developmental struggles. (Again, links to some of those studies and articles are in the post linked above.) The knowledge pulled and gnawed at me every time I struggled to engage with Alex. The shifts in mood, the struggles to get him to do simple things like eat, wash his hands, or even just accept hugs and kisses from Bertski and I without withdrawing first. Every time I watched him shut down around people, or scream in terror when approached by children on the playground, my insides, my heart twisted. When he stopped eating nearly everything and would only touch hard, rough textured food….when we were told by early intervention he was delayed at least 25% in speech and possibly more in other developmental areas….as I watched his symptoms become more pronounced over the course of the past 11 months, my mama gut begged me to turn a deaf ear to fear and just face reality, listen to what it was trying to tell me. I wasn’t going to be able to help Alex if I didn’t. I wasn’t going to be able to be the mother he needed me to be if I didn’t.

So I did, and I started talking to Bertski about it a few months ago. He expressed that he had been watching Alex and having the same thoughts about his behavior and development and what had possibly caused him to develop the way he had. We agreed that in addition to my illness being untreated for so long possibly being a factor, the instability of our relationship during Alex’s first two years was likely a factor as well. It was a tough set of conversations…thinking about them still makes me cringe. But I’m glad we had them because it enabled us to move forward in seeking help. We knew Alex needed more help than we could give him and WE as his parents needed help parenting him. His issues had started to become beyond us and the daily struggle of trying to navigate them was overwhelmingly frustrating and discouraging.

His 3 year visit was two weeks ago, with a new pediatrician here in Austin. We told her everything, with her interjecting a question or two every now and then. She listened attentively until we finished spilling our parental guts out to her. She was quiet for a few minutes and then started to give her thoughts: “It’s obvious he’s very smart-I can see that for myself in just the short time he’s been in here. But from my brief observation and what you’ve told me I would go ahead and say he’s definitely on the autism spectrum. My initial guess would be high functioning but he does have significant speech and socialization deficiencies. Further evaluations will give us more information. The good news is we’re catching it now-early intervention is crucial. We’ll get him into various therapies and by kindergarten I’m confident he’ll fit in just fine with other kids in a regular classroom environment. He’ll catch up, he’ll excel. I’m sure even within just 6 months we’ll see significant improvement.”

We walked out of that appointment with an answer, with hope even, but also with some sadness. A heaviness rested on us for the remainder of the day. Even though we had been preparing ourselves to potentially hear such a diagnosis for Alex, the reality of it still hit us pretty hard. I can’t speak for Bertski, but I know for me, the guilt was excruciating that day. I called and talked with the pediatrician about it some more, explaining my illness and how it impacted my ability to bond and interact with him during my pregnancy and his first year and a half. I expressed to her what my difficulties had been and she didn’t shame me for them:

“Based off of the research, your history, and where he is developmentally, I’d say it is highly likely that there’s an association. Being depressed and not having effective treatment can definitely have the kind of impact on a child’s development and behavior like we’re seeing in Alex. But you don’t have to blame yourself for it. You’re helping him now-he’s older and you’re recovered and managing your Bipolar as best you can-that’s what’s important. Yes, this happened, but it’s ok, you’re getting him help just like you sought help. It’s not your fault, Mrs. Nieves.”

No, being depressed during my pregnancy and struggling with PPD and anxiety the first 2 years of Alex’s life wasn’t my fault.

I would even go as far as to say that not being treated for so long wasn’t my fault either-there was so much I just didn’t know, and when I did express what I was enduring to those around me and my OB, I was told it was all “normal,”…given time, I’d be “fine.”

You know, they say we can only do better when we know better. Given my circumstances, I know I did my best and when I couldn’t, I fought to.

I don’t think I failed Alex. I do think my illness failed both of us-it robbed us of having a strong start and that’s what hurts me the most when I think about how it’s impacted him.

But I’m learning now how to use the hurt to lay a new foundation for us to build upon. I’m learning how to advocate for him and learn all I can to help him like I’ve done with myself and my illness. Alex has started ABA therapy and is already showing progress. He has upcoming evaluations with speech therapist to work on improving his language and an occupational therapist to help with his autistic and sensory related struggles.

(sigh)

Accepting that there’s possibly an association between my illness during pregnancy and Alex’s development struggles is a hard truth to stare in the face y’all. I know it’s not everyone’s truth, but it’s MY truth and I’m working hard once again to process it, heal from it, ditch the guilt over it, and move on now that I know where he’s at. I’m not sharing this to say that what’s true for me and Alex is true for all moms with untreated antenatal depression & PPD. It’s not at all. But I am sharing it to say that you know those effects they talk about in those studies? I’m watching my son live with them. It DOES happen. It’s in the minority, but it does happen-I wish it was talked about more-not to shame anyone, but to help women understand that they don’t have to BE ashamed that this happens. Does that make sense? I hope it does.

I’m not here to scare anyone or have you think that you and your child are in the same boat as we are. Definitely not. But I am here to say that if you ARE in the same boat we are-It’s ok. It’s not your fault. Illness may have robbed you and your child of a strong start, but don’t let guilt rob you of anything else. I know it hurts like hell, and you feel like you could’ve done more, but you did your best with what you had and don’t let shame deceive you into thinking otherwise. You’re still an amazing mama to your child. You’re not a bad mother. Our children will be okay because they have us and they have others to help them get to where they need to be.

If your child is showing signs of delays-don’t let shame keep you from getting help. Ask for evaluations and resources. Talk to their doctor and ask about Early Intervention. Be open. Be honest. Be their advocate just as you’ve been for yourself.

I hope this made sense. It’s late and I’ve had a rather emotional day. Also? I could REALLY use a friend in this particular boat.