Musings of a Marfan Mom

I Don’t Care

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I went to a little party for other “autism moms” recently. In between the snacking, catching up, and you-won’t-believe-what-the-school-did-now stories, a conversation about the potential causes of autism began.

If you follow the news at all, you’ll see theories as to what causes autism nearly every week. Maybe it has to do with the time of conception. Or the mother’s stress level or use of anti-depressants during pregnancy. Then there’s maternal antibodies (from the flu?), or the theory that autism is actually an autoimmune disease. Confused yet? I know I am!

But here’s the thing:

I don’t care to know what caused my son’s autism.

So many of these theories are things that aren’t preventable. I mean, do researchers think people are going to abstain from sex for three months out of the year to prevent autism? Not using anti-depressants might seem like an easy choice, unless you’re the woman who needs them in order to live. How much of stress can we really control? Even getting the flu vaccine doesn’t always prevent the flu.

While I was pregnant with the Menininho, my husband took a job across the country when I was 10 weeks along. My mother and sister moved several states away at 14 weeks. I alternated between my brother living with me, a best friend living with me, and living alone. I also accelerated my Masters degree so that I could graduate at 34 weeks pregnant, and then moved 3 weeks postpartum so our new family could all live together. You could say that I was a little stressed. Some of those stresses could be forseen before we decided to have a baby, others not.

But if the Menininho’s doctor could look me in the eye at his next appointment and say “Maya, we know for a surety that your stress during pregnancy caused your son’s autism,” what good would that do me? I can’t change anything. It wouldn’t have even helped with Baby J’s pregnancy because how do you easily quantify stress? The only thing it might do is add to the stress I’m already under trying to address M’s diagnosis.

I battle guilt being a mother on a daily basis, “typical” mom guilt: are my kids eating a balanced diet? Is it a problem that M asks for Sid the Science Kid and Ellen DeGeneres by name? Then I add on the “autism mom” guilt: are our behavior tactics the right ones? Should I have said yes to that second session of speech therapy a week? I don’t need to add the guilt of the idea that I could have somehow prevented the Menininho’s autism on top of that.

No. Instead I’ll focus my energies on finding the right treatments for M. What’s done is done, and dwelling on whether I could have done something differently only takes valuable energy away from taking care of my family. Call me when scientists find a cause we can prevent but until then, you can find me enjoying my boys and trying to beat autism.

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13 Comments

  1. Wonderful post. While I’ll read and cover what research I can as it comes, out, the worry about what caused my three to be on the spectrum is long gone. I can accept the vague answers of something to do with genes, difficult pregnancies, etc. What matters is now.

    I would like to see a large portion of the research dollars turn to effective treatments and training for adolescents and adults.

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    marfmom Reply:

    Me too! Being married to someone on the spectrum, I’m very aware of the lack of services for adults. It’s as though doctors think autism stops at 18! I hope this changes by the time M is older.

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  2. What a great post. I think sometimes people get too wrapped up in the “whys” that they forget to focus on the real issue. What caused autism isn’t going to change the fact that he does have it and it needs to be addressed.

    When I worked at the daycare there were a few kids there that were autistic and it was stressful. The parents were stressed, the staff was stressed…what good would it do to tell a mom “Hey your stress levels while pregnant MADE your kid autistic. If you could have avoided that you’d have a perfectly healthy kid!” Wow. Way to make an already hard situation even harder to deal with.

    I think you are a wonderful mother and I always love reading your insight. Those boys are soooo lucky!

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    marfmom Reply:

    Thanks :)

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  3. Another wonderful post, M. I agree that agonizing over possible factors isn’t healthy. It’s the now, with a nominal does of the future, that will keep you going as a family. I also wish the focus, and money, were more on treatment

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    marfmom Reply:

    Yes! Treatment is what gives my son a chance at a more typical life. If more money were available for treatment, a good chunk of my stress would be gone because I wouldn’t be worrying about what we’d do if his services were cut.

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  4. Being a mom of two is difficult enough – I know!
    You are right to not bother yourself with the “whys” and the “what ifs”, because those words are, exactly, what stress is about!
    I feel you! Everytime these words cross my mind, I block them hard! I think to myself: my babies are happy with themselves, so am I!

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  5. (does was supposed to be dose. Whoops!)

    The system is so messed up. There’s more money/status/perks/whatevs to be gained on the speculative prevention-side. Treatments aren’t so glamorous and I think people forget that. It’s one of those times where we all need to speak up for what we feel is right. Support for one another, whether autism is immediate for us or not, is personal.

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  6. I found your blog/post via a retweet on Twitter and this really resonated with me. My daughter has a different disability and sometimes I sit up at night wondering what caused it (nobody knows) and what I could have done differently. It’s a post like this that reminds me that I need to let go and move forward – there’s nothing I can do to change what happened and I may never know the cause. Thank you for writing this.

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  7. I’m not there yet, I do struggle with wanting answers as to “why” my kids aren’t developing typically. Someday I might feel the same way as you do, but not right now.

    I completely second the notion of services geared toward adults and adolescents. I know that the hope is that with early intervention, these kids won’t need so much help as they get older, but as you said, autism doesn’t stop at 18 and I know that is something that is ALWAYS on my mind.

    And might I say, that picture is adorable!

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  8. Chica! Right on! I am glad for you and proud of you for being able to take that stand on the issue. I often feel the same. Every so often I ALWAYS seem to let guilt and what ifs creep up. But eventually I find my way back to what’s done is done, don’t add useless stress. I think I’d want to know if I DIDN’T cause it in ANY way. That would help me let go of any guilt forever. But I know that won’t happen. There are soooo many causes I bet. I think my son was genetically loaded (due to my neurological issues), but something pulled the trigger and set it off. For him I think it was anemia. But I didn’t know what I didnt know until I learned it. Know what I mean. I try to remind myself of that. I bent over backwards trying to be the best mom on my first go at it. So that should be all that matters. I read and researched so I did what I could. I try to chalk it up to just being a part of God’s plan!

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    marfmom Reply:

    Yes I’d agree with that…I’d want to know if I didn’t have anything to do with it. As far as M is concerned, I believe he was born autistic. I mean, he had signs from about 5.5 months of age onward, though he didn’t start losing skills till about 11 months. So I figure whatever happened must have been during the pregnancy. Like you said though, I didn’t know what I didn’t know and I’m not sure how much I could have controlled anyway.

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  9. Aww don’t feel guilty. As moms we do the best we can and control everything like you said (althought it would be nice :-)

    I used to feel (still do at times) that my CJ got injured in utero (i know i spelled that wrong!) because I was severely stressed. I had a horrible marriage and left my husband to move back to NY when I was pregnant. I worried all the time back then and also ate lots of sugar………talk about guilt.

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