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.

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18 thoughts on “My Hard Truth

  1. Love this!! You have such courage to face this issue and to write about it. I have incredible admiration for you. And I so very, very strongly identify with what you’ve written. I, too, struggled my first years after my son’s birth and it did affect him. We’re still dealing with the aftereffects–both of us. For us, I’m afraid the effects will be more permanent because we got so little help for so long and such inadequate help after that. Much love to you, mama. You are not alone.

  2. Oh mama!!! I don’t even know where to start.. There is just so much I want to say to you. I want to start off by saying I’m so glad that you finally are understanding that IT IS NOT AND HAS NEVER BEEN YOUR FAULT! Before I state the following I just want to say that u and I both know I’m no doctor so I’m just stating what I have experienced. Ok…
    I really truly don’t think your mental illness or your rocky relationship had anything to do with Alex having autism. I think it maybe have caused you not to get him screened early and this diagnosis earlier, but it didnt cause his autism. With everything I have learned and the families I have worked with I believe that it’s a gene thing. Rather its a missing gene, a malfunction of a gene a triggered gene, I don’t know, but I think that’s where it is we just haven’t figured it out yet. All of the families I’ve worked with have had solid relationships, and the mom nor dad had any depression. Yet their kids have autism and their autism is far worse than what Alex is experiencing. And the reverse could be said about parents who started out like you and their kids don’t have autism. I just feel like there still isn’t enough research done yet to say that ur illness causes his. I feel like they are jumping the gun like they did with the whole shots and autism thing. People swore that our kids getting all the shots they do in the beginning is the cause. People even wrote books cough Jenny Macarthy..end cough (don’t even get me started on her!) and we learned that,that was the furthest from the truth. I think we want an answer SO bad as to why this happens that a possibility pops up and we jump at it before even exploring it.
    So please don’t blame yourself. If you wanna do the should of could of’s then blame your self for not getting him help early and that’s as far as this friend/ ABA therapist will allow you to go. And I’m even uncomfortable doing that, because you were working on yourself and that HAD to be what was taken care of first!
    I am so glad ABA is working for you. You know that is a passion of mine. Keep it up I KNOW it will work! I do hope that someone with similar situation reaches out to you DO HEAR THAT!! She won’t bite I promise! I just want u to hear their stories and find comfort in knowing you aren’t alone.
    I love you my sweet girl and am so glad everyone is getting the help they need. You my love ROCK!! Ok I’ll stop taking up your feed. Love you!

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  4. Sending you my love. I think you’re doing a great job (not that it matters what I think, haha, but I want you to know it anyway and feel it is true). You are a great mother & advocate for yourself and your boys. I believe in you. You are strong. You will fight to get Alex everything he needs. Love you.

  5. Thank you for writing all of this out, and for being so open, like you always are. I’m so grateful for the words you heard from the pediatrician, that it’s NOT your fault. And I know you’re doing the best you can and you ALWAYS HAVE been doing the best you can. I’m not sure if you know this, but my oldest was diagnosed with developmental delays at age 5 (she received physical and occupational therapy for a few years) and with Aspergers at age 9.

  6. Thank you for writing all of this out, and for being so open, like you always are. I’m so grateful for the words you heard from the pediatrician, that it’s NOT your fault. And I know you’re doing the best you can and you ALWAYS HAVE been doing the best you can. I’m not sure if you know this, but my oldest was diagnosed with developmental delays at age 5 (she received physical and occupational therapy for a few years) and with Aspergers at age 9.

    • Thank you so much Jenna. I didn’t know, but now that I do, I have even more respect and admiration for the strength you have and how amazing of a mother you are. How is she doing?

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  8. Keep your own words close to your heart -““No, being depressed during my pregnancy and struggling with PPD and anxiety the first 2 years of Alex’s life wasn’t my fault.” You are so brave for sharing your truth and your story. You are managing your disease, and the therapy will help him so much. Sending you so much love.

  9. What a beautiful statement! As a pediatric OT and a family member of persons living with bipolar disorder, I am impressed with your dedication to press on, adapt, improve the situation, spread the word! Wow. I’m definitely following and sharing your blog!

  10. I’m so grateful that you posted this. I have come to the point in my life that I need to own up to the fact that I was severely depressed during pregnancy, struggled with no help for my 2 year+ postpartum and my continuing depression, anxiety, and OCD. I’m now facing possible issues with my now 5 year old as she is going to be tested for autism and other delays during her kindergarten year. I didn’t know there could be a link between my issues and the development of my child. Hearing that feeds the guilt I already carry for the past 5 years of struggling I’ve done but I’m now seeking help and reading posts like this give me direction, camaraderie, and simply a place to begin addressing the problems that we’re both facing. Thank you for giving me hope.

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