Inside the thoughts of a crazy woman

When something bad happens to you, like your child being diagnosed with a neurological disorder that has no cure, sometimes your mind thinks weird thoughts.  Irrational, strange, bizarre, and peculiar thoughts.  There are a lot of emotions going on in your mind as well, such as sadness, fear, anxiety, despair, jealousy, and anger, among others.  One of the biggest (and most irrational) of my emotions when my first child was diagnosed with autism was guilt.

What causes autism?  No one really knows for sure.  Most scientists agree that genetics are involved, but are not certain if other factors are involved as well.  In the middle of my most irrational, guilty period after SB’s diagnosis, I was certain that I had somehow caused this to happen in my child.  Please know in advance that I DO NOT actually believe that any of the things on this list caused autism in either of my children.  I’m just letting you inside the thoughts of a crazy woman (me.)  I’m warning you, it may not be pretty…

1. In the second trimester of my first pregnancy, I fell down the stairs.  Not a head-over-heels tumble, but just a slide down on my backside, my tailbone hitting each step with a “bump, bump, bump.”  I was carrying some bottles of soda to store in the refrigerator we have in the basement.  (More on soda later.)  I was more stunned than anything, so I got up and brushed myself off.  I continued to feel the baby move, so I didn’t think much of it.  The next day I had to speak to my Gynecologist’s office about my Gestational Diabetes (more on that later as well), and when I mentioned the fall, the nurse really let me have it!  She scolded me for not coming in right after the fall, and demanded that I put down the phone, grab my purse, and head to the hospital immediately for a stress test.  I was shocked and terrified, not realizing that I may have put my baby in jeopardy.  Turns out everything was fine as far as they could tell.  But later I wondered – could falling down the stairs and not going to the hospital immediately have caused my son’s autism?

2. I had Gestational Diabetes in both pregnancies.  It was a major pain in the ass! Thankfully I was able to control it with diet alone, and didn’t need insulin.  I had to prick my finger four times a day to check my blood sugar (as a clarinetist, this was especially annoying because I had sore fingers all the time) and had to keep my blood sugar between 80 and 120.  Being the Type-A person that I am, I was pretty good about eating what I was supposed to and following all of the doctor’s directions.  My doctor always seemed pleased when she saw my blood sugar numbers at my check-ups.  But I may have strayed a few times, occasionally eating a small piece of cake or a serving of rice that was a little too big.  Once in a while, my blood sugar may have reached 145. (gasp!)  If you know anything about diabetes, 145 is not really that high, especially when I think it happened less than 5 times in 3 months.  But later I wondered – could that piece of cake I ate that caused my blood sugar to go up have caused my son’s autism?

3. When you have Diabetes of any kind, sugar and carbohydrates make your blood sugar go up quickly. This is why you have to limit those things.  Protein does not have this effect, however, so you can eat lots and lots of protein and still keep your blood sugar in check.  The diet I was supposed to follow required me to eat protein 6 times a day.  Who eats that much meat?  So I found myself eating tons of peanut butter.  I put it on ice cream, in oatmeal, and on all sorts of stuff that might make a non-pregnant person’s stomach churn.  And I later wondered – could all of that peanut butter I ate have caused my son’s autism?  (Okay, really, there is no logic to this one at all.  I know.)

4. I am addicted to soda.  I always have been.  My parents laugh that one of my first phrases as a toddler was “Dink of bop.”  (Drink of pop – I am from the Midwest, you know!)  I drank regular soda until I was in my late 20’s and realized I needed to lose some weight.  So I joined Weight Watchers, and switched to diet soda.  Yes, I know it’s full of chemicals that are very bad for you.  Yes, I know that it peels paint off of cars.  I’ve read all those articles, too.  Like a smoker addicted to nicotine, I just can’t stop.  I really think that if someone told me I could never drink alcohol again, I would be disappointed, but I could do it.  But if someone told me that I could never drink soda again, I don’t think I would be able to handle it.  I could try, but I would probably be like the alcoholic who goes to the bar for a drink right after my AA meeting.  I drank diet soda during both of my pregnancies.  My doctor said it was fine.  My doctor and I actually discussed different artificial sweeteners at length since I had Gestational Diabetes and sugar was mostly forbidden.  Even though I had my doctor’s blessing, and even though I never consumed more than 12 ounces in a day, I still noticed the dirty looks I was getting from strangers and even friends who saw me with my can of Diet Dr. Pepper.  And later I wondered – could drinking diet soda with aspartame have caused my son’s autism?

5. Before SB was born, I read tons and tons of books, including several about breastfeeding.  I was incredibly determined to breastfeed my baby.  It was the very best thing to do – everything I read told me so.  And everything I read also told me that you should absolutely, positively, NEVER give a newborn baby a bottle before they learn to latch on to the breast, or they will get lazy and never learn how to latch on.  So when I brought SB home from the hospital, I put him to my breast every 60-90 minutes like I was supposed to, even though he slept almost constantly and hardly ever woke up to eat.  “Is he latching on?  I can’t tell!  How are you supposed to tell?  Does it look like he’s sucking?  How the hell am I supposed to know?  Is he peeing?  Is this diaper wet?  I’m not sure!”  After 4 days of this, I was starting to get nervous, and my baby was starting to look yellow.  But we got hit by a big snowstorm, and couldn’t go anywhere until day 5.  When I finally showed up at the hospital, they took one look at my baby and started to panic.  Apparently, he had not been getting nearly enough milk, and he was incredibly jaundiced with a bilirubin level of 25.  (Anything over 10 gets a diagnosis of jaundice.)  He was immediately admitted to the NICU and placed under phototherapy lights, and was also given a strict schedule of round-the-clock bottle feedings every 90 minutes.  I was crushed, and very afraid.  Not only was my baby being bottle-fed with formula (Oh no!  Everything I had read told me that this was the most terrible thing you could do!), but my own stupidity about babies and stubbornness to breastfeed had put my child in danger.  I overheard one of the NICU nurses say when she thought I wasn’t listening, “Bilirubin of 25!  That could cause brain damage!”  I can’t put into words the horror I felt.  And later I wondered – could my son’s very bad jaundice have caused his autism?  This question leads me directly to number 6:

6. After SB got over his jaundice and was released from the hospital, I worked very closely with a lactation consultant, still determined to breastfeed this baby.  Here was her schedule for me: feed him every 90 minutes day and night for at least 20 minutes per side, then feed him a specified number of ounces of previously pumped milk in a bottle to make sure he was getting enough, and then pump out the rest to keep the supply going.  So this usually left me with 30 minutes or less before I had to start the cycle over again.  During this small window of time, I could choose to eat, shower, or sleep in between feedings, but I never had time to do more than one of those three things.  I rarely showered.  I took him to the doctor for weigh-ins at least once a week, but he usually did not gain what the lactation consultant considered was enough.  And I kept up this ludicrous schedule until he was six weeks old!  I have no real memories between weeks 2 and 6 of his life.  At some point in his 6th week, I finally snapped.  I went to my husband in the middle of the night and sobbed, “I can’t do it anymore!  I’m a terrible mother!”  I was absolutely certain that everyone in the world would look at me and see me as a failure for quitting breastfeeding.  I was unable to see that hormones and sleep deprivation were probably causing me to be less than rational.  My husband later confessed that he had never been happier that I had finally decided to stop this madness.  So my baby drank formula.  And he gained weight and got fat.  And he was fine.  When AB was born, I tried again.  But by day 3, I started to notice the same symptoms – not really latching on, not much urine, etc.  So I gave up more quickly.  I was NOT going through that again!  But later I wondered – could being formula-fed have caused my child’s autism?

7. The American Academy of Pediatrics began its “Back to Sleep, Tummy to Play” campaign in 1992.  Since they began recommending this sleep position, the AAP reports that the annual rate of Sudden Infant Death Syndrome (SIDS) has declined more than 50 percent.  So of course I complied and always put my new baby to sleep on his back, despite my mother’s insistence that a baby put to sleep on its back will choke on its own spit-up.  (This never happened to my children, but it’s what she was taught when she was a new mommy.)  When SB was around 3 months, however, I started to notice that he always slept with his head turned to the left, never to the right, and it was causing his soft little head to become misshapen.  A trip to the pediatrician got him a diagnosis of Torticollis, which is the result of injury to the muscle that connects the breastbone, head, and neck.  The injury can occur during birth, but it also can occur while the baby is still in the womb.  It is not a serious condition, and we were referred to a physical therapist to correct it.  The “flat head syndrome” also has an official name, which is Positional Plagiocephaly.  The pediatrician gave me some information about purchasing a helmet for him to wear to correct the misshapen head, but insisted that it was optional, and not necessary.  The physical therapist also confirmed that she did not think the helmet was necessary.  But as a paranoid, possibly (probably) hormonal new mommy, I started researching this treatment.  It would require him to wear a fiberglass helmet for 23 hours a day for possibly several months.  Even though this seemed like an excessive treatment, we considered it.  (Well, I don’t think my husband actually considered it.  I think he was just humoring me.)  In the end, we decided to skip the helmet after I spoke to my aunt, who is a Gynecologist and whose opinion I trust.  Her advice was to keep doing the physical therapy for the Torticollis, but that the helmet was not necessary because his head would reshape itself as he grew.  And she was right, for the most part.  SB is now 6 years old, and if he is in the bathtub with his hair wet and slicked back, and the light is just right, and I squint just so, I can see the asymmetry in his head.  But I am pretty sure no one can see it if they aren’t really looking for it.  Every medical professional and therapist I have spoken to has insisted to me that that Positional Plagiocephaly is purely cosmetic, and has no impact on brain development.  But it did cross my mind – could my son’s asymmetric head have caused his autism?

8. I lived in Lima, Ohio from age 12 until I graduated from high school in a house that was less than 3 miles from a 650-acre petroleum refinery.  This refinery has been owned by a number of companies over the years, but during my time in Lima it was owned by Sohio, then British Petroleum.  There was a flame that burned on top of a tall tower at the refinery 24 hours a day, 7 days a week, lighting up the night sky.  The night sky was so bright, in fact, that the only thing I could see with my telescope at my house was the moon.  If I wanted to actually look at the stars, I had to drive somewhere else.  There was a constant cloud of white smoke being puffed into the air from several different places on the refinery’s huge campus.  I have read a little bit about the magnitude of pollution that an oil refinery produces.  I am certain that I was exposed to some amount of pollution in the air, water, and soil during my teenage years in Lima.  And later I wondered – could exposure to this pollution when I was young have caused my child’s autism?

9. Having been in the autism world now for over 5 years, I have read a lot of books about autism and met a lot of people who also have children with autism.  And when you talk about autism, you just can’t avoid the topic of vaccines.  Even though every recent scientific study published concludes that vaccines do not cause autism, there are thousands of people in this country who truly believe that their child’s autism was caused by a vaccine.  Most people who believe this report that their child had been developing normally until they received a vaccine.  Then, the child started to regress in development or lose the ability to speak.  We did not experience regression with either of our children.  I actually feel that SB’s development was behind the norm his entire life, getting more and more behind until finally the pediatrician told me that we couldn’t ignore it anymore.  I never noticed any regression in skills in either of my children.  But reading about this topic and hearing about it on the news all the time can make a parent a little bit paranoid.  What if those parents are right?  What if vaccines DID cause their child’s autism?  And if so, could vaccinating my child have also caused his autism?
Like I said, I don’t truly believe that ANY of these things caused autism in my children.  This is just a list of things that crossed my crazy mind.  In fact, now that both of my sons have a diagnosis, I can certainly rule out things like falling down the stairs while pregnant, SB’s flat head as a baby, and SB’s bad jaundice.  And having a diagnosis for both of them makes an even stronger case for just plain genetics.  It was hard, but a while back I made a conscious decision to stop worrying about ALL of these things.  There is just no point in spending mental energy on things that have no basis in scientific fact.  I guess my advice to other parents in this situation is this: if you are also having crazy thoughts, you are not alone.  It’s normal.  (I think.)

It’s easy to focus on the “why?”  Why did this happen?  Why do my children have autism?  And I do think that those are important questions, but they are not for me to answer.  Those questions are for people who are much smarter than me and have PhD’s in science.  I am happy to give money and participate in fund raisers for organizations who support autism research.  I really hope that someday scientists will figure out exactly what causes autism.  But I have decided to stop focusing on the “why,” because it can really make a person crazy.  My time and energy is better spent on figuring out how to help my two children.  I am constantly reading, going to lectures, and trying new things to try to help my guys.  The most important thing for me to do is figure out what is going to help SB and AB become independent, happy, healthy members of society who have positive personal relationships in their lives and feel that they have a sense of purpose.

4 thoughts on “Inside the thoughts of a crazy woman

  1. I applaud your candor and honesty, my friend. And remind me to tell you me own breastfeeding-obsessed story some time.

  2. Thank you, Mindy. We, as moms, can really flog ourselves, can’t we? My children do not struggle with autism, but we did have our share of challenges at birth and early infancy. In other words, I don’t think that mothers of autistic kids have the market cornered on guilt. HOWEVER, I know that that’s NOT what you’re saying here. You’re right … We moms are not alone when it comes to the guilt we feel for this, that, and the other.

  3. One of the things about genetics is that ultimately genes are instructions that get executed by our bodies. Basically I see it has a hierarchy:

    dna base pairs -> amino acids -> genes -> proteins

    By the time your DNA is read by a cell, the instructions are already hard coded. So it’s kind of like a computer. The computer is going to execute the instructions it received, regardless if that’s what you really wanted or not.

    What I am getting as is that regardless of what causes autism, the end result is that the commands (genes) that our bodies execute show up as the symptoms of autism. The question then becomes what caused these genes to be changed/mutated in the first place?

    So the claim that I am making is, is that there is a concrete correlation between environmental factors and the end result of genes that ultimately get executed by our bodies. But I (nor anyone) have a broad enough view to really figure out what autism is on their own. Many groups of people are needed to be able to figure out what is really going on.

    If we as a society really want to answer the question ‘What is autism?’, I believe it needs a very large, tightly controlled collection of multiple groups of people. Below is my (initial) view on the groups of people that are needed. Each group in themselves does not have enough information to be able to answer the question, but with the concrete goal of figuring out what autism is, I believe it is our best bet into finally being able to answer the question, ‘What is autism?’:

    1. Statisticians
    This is similar to what Mindy posted about, but on a much larger scale. A very large sample size of people is needed for this (both families with and without autistic children). The goal is to acquire data like, what types of drinks did people drink, what did they eat, how much sleep, what is the age of the parents, what were the children exposed to: food, drinks, vaccines, how much play outside, how much play inside, why is there a 4 to 1 ratio of boys to girls with autism…and a whole ton of other similar questions. The idea being to gather the most common traits among autistic families, to give other researchers the highest probability of the environmental factors that could be contributing to autism.

    2. Gene Researchers
    The goal with using gene research is to find out which instructions are being modified. Questions like, is autism inherited from the parents (aka, are the trigger(s) in the sex cells?), or is autism somatic (acquired after the child was born?). Another question; are the affected genes in all cells, or is it more mosaic, where only certain cells are affected, but not others?

    3. Therapists / Teachers / Parents (anyone who works with autistic children on a daily basis)
    This group of people are going to be most familiar with things like the behaviors that are common among all autistic children, and the behaviors that are unique. They are going to also be familiar with the most and least effective methods of working with autistic children. This information is very valuable, and can also point other groups in the right direction. This group is also necessary for the successful upbringing of autistic people.

    4. Historians
    Historians, somewhat similar to statisticians, could find out answers to, when was autism first recorded, what geographic areas have autistic people, what is the percentage of people in a given region at different points in time.

    5. Analysts
    Analysts put all of this information together, and point each group above in a direction based upon the collective information gathered. The groups above all have their own perspectives, but need the information from each group to be pointed in the right direction in where to look. Analysts for example would take the highest probable environmental factors, and give that to the gene researchers, who could then in turn have a better idea of which genes to focus on.

    If such a collection of people could be put together, I believe we can finally answer the question: ‘What is autism?’.

    –Shaun

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