When It is Just Too Hard

“I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.” ~ Gilda Radner

I often have people come up to me when learning our story and say, “Bless your heart, I could never do what you do.” They are referring to the hours spent cooking everything from scratch, researching medical treatments and the best interventions for my kids, the patience needed to guide a child who perseverates, the hours (and patience and research) involved in homeschooling two active little boys … And while I am sure that they mean well, these comments sometimes hurt, as do the comments from people who say, “We all have to die of something. I prefer not to pay attention to the crap in what we eat or in our environment and just enjoy a good quality of life instead of panicking about everything.” Thus implying that not only is our life really lousy because I care what my kids wear, ingest, and breathe, but that I am also paranoid about life. (On a side note, this also makes me sad for them, as this implies that they really don’t care what they or their kids die of, or the suffering that may involve in the meantime, because they don’t wish to look that far ahead.)

Let me explain a little about why I do what I do.

 

In The Beginning

Nine years ago, I was four and a half months pregnant with my first child. While we were blessed unexpectedly with this pregnancy, we were very excited and happy to welcome our baby into our family. We had just moved back to the area where I grew up to simplify finances and to be close to family, and we were excited for our upcoming ultrasound in a few weeks to find out whether we were having a boy or a girl (I had a strong feeling it was a boy). We called the baby our little “blueberry”.

While pregnant, like all good mothers, I followed my doctor’s advice. I avoided anything that might make me or my baby sick (per doctor’s advice). In the beginning, I had terrible morning (well, really evening) sickness, and lost 10 pounds right away (that I didn’t need to lose). The doctor encouraged me to eat anything that sounded good to me, which at the time was Kentucky Fried Chicken mashed potatoes without gravy. Drinking 7-Up or Sprite helped to ease my nausea. When I entered my second trimester, the morning sickness eased up, and I started to be VERY hungry, with cravings for McDonald’s fish sandwiches (two at a time), Oreo McFlurries (though not as strong as the cravings I had for them in my second pregnancy!), and other not-so-healthy food. None of what I ate concerned my doctor, although as I started to really pile on the weight, I was urged to “take a short walk after dinner” to increase my activity level.

At my 23 week appointment, my blood pressure started to be a little elevated. The nurse decided to check it with a large blood pressure cuff instead of a regular sized cuff and found it to be a little lower and said, “That’s better” (but not accurate). Since we were still driving into the city for our appointments (we were still seeing the OB doctor that was near our old home) and we would have to deliver at a hospital that was almost two hours away from our current home, we decided to switch OB doctors at around 30 weeks. However, at this point my blood pressure was elevated and we were having a difficult time finding someone who wanted to assume my care this late in pregnancy.

Thankfully, we found a wonderful OB doctor that I worked with at the hospital (at the time, I was working in mother-baby nursing as an RN) who was willing to see me. My blood pressure was elevated, I was quite swollen, but so far, my labs were just under borderline and “acceptable”. This changed within two weeks, though, when my blood pressure elevated to 150/100 and I was officially placed on bed rest and given leave from my job.

I want to note here once again: I did everything that I “should have” as instructed by my doctors and as I read in all those “what to expect when you’re expecting” type books. However, knowing what I know now, I know that my diet was atrocious. This was never once brought up in appointments. I passed my glucose test and I was gaining weight appropriately, so my diet must be fine and typical. Thankfully during this pregnancy, the flu vaccine never came up, and they were not yet routinely administering the Tdap vaccine.

There is one thing that I did slightly different in this pregnancy than what the doctors recommended: while my doctor and his nurse told me that I could take Tylenol for aches and for sleep during pregnancy, I avoided taking all medication outside of my prenatal vitamins. When I had bronchitis at 23 weeks, instead of taking antibiotics and Tylenol and other medications, I stayed home, rested, and took in plenty of fluids. My husband (who grew up in Europe) made me chicken soup and other remedies that he remembered from his mom. I am so thankful that at least I did this right, without really knowing why. (Now if you’re thinking as you read this, “You know, taking a little Tylenol every now and again won’t hurt you”, please know that ONE DOSE of Tylenol shuts down your body’s production of glutathione (its key antioxidant) for a month afterwards, thus decreasing your body’s ability to heal, fight the infection, and recover. ONE DOSE.) (You can learn more about the side effects and dangers of Tylenol here) (Update of July 2018: Tylenol use during pregnancy has since been linked to things like autism, ADHD, and asthma.)

Fast forward a few months, and at 35-36 weeks of pregnancy my blood pressure shot through the roof, I was spilling 3,000mg of protein into my urine on a 24 hour test, I had a headache and was having visual changes, and upon appearing at the labor & delivery unit to be evaluated, I was promptly admitted and began induction for labor.

I won’t go into all the details, except that it was a pretty typical medically-managed delivery: Cytotec and then Pitocin for induction, an epidural at 3cm, and an episiotomy at delivery. The added details: I did not get out of bed for 24 hours as I was on magnesium sulfate to prevent seizures and had a catheter for accurate output measurements, I was given hydralyzine to reduce my blood pressure, I was pressured into an epidural I didn’t want because the doctor was afraid I was going to have a stroke with my elevated pressures, after said epidural I proceeded to drop my blood pressure from 200/120 to 100/50, thus causing my baby to not receive enough blood from the placenta and to drop his heart rate into the 60’s for several minutes (which thankfully resolved with fluids and position change instead of having an emergency c-section), and then near the end of the labor period, I ended up with a 103 degree fever and chorioamnionitis, so I ended up delivering a baby a little after midnight who did not breathe, had an elevated body temperature and probable infection, and I was so out of it between the mag sulfate and the fever that I really didn’t even comprehend what was going on. I kissed my barely breathing baby quickly as he was whisked off to the NICU as the doctor attempted to stop my hemorrhaging, and when the dust settled, I was a mom and still didn’t know what all happened.

The next week we spent in the hospital, and I was discharged on Labetalol for my blood pressure while my little guy in the NICU went through a course of antibiotics and thankfully did fairly well with everything that had been thrown at him. He learned to nurse around day 4 of life and by a week, we were cleared to go home. I lost 40 lbs. that first week with all the extra fluids I had accumulated. I had been so swollen that some of my coworkers didn’t even recognize me.

In my son’s first months, I again did everything that my doctor’s advised, with a few exceptions. With my son being early and a little on the smaller side, I did decline the hepatitis B vaccine in the hospital. Even with all my medical training early on (and being taught to just accept everything that was recommended), it did not make sense to give a vaccine to this little person who had just been through so much that was to prevent a disease he could only get from me if I had hepatitis B (and I was hep B negative), from sex (um?), or from IV drug use (I planned to keep him away from that in his first days for sure).

Once we were home, he nursed well, and really, the first days were uneventful. We delayed vaccination a little, again because I felt he was just so small but otherwise I really didn’t think too much about it. Our doctor agreed with our decision as he was exclusively breastfeeding and thus she felt he would get all the antibodies he would need from me, and we started routine vaccinations at 4 months of age with all the recommended doses. He received these again at 6 months and 9 months of age.

We introduced rice cereal at 4 months of age as recommended by our pediatrician as he was on the skinny side (although following his own growth curve), and this did help him to jump up to the 25^th percentile for weight (although he always was in the 90^th or above for height – he still is a tall, skinny guy). He weaned himself at 4 ½ months of age, and we switched to generic Similac-type formula which he seemed to tolerate well. At six months, other foods were introduced, and he loved peas and other veggies. He met all his milestones, said his first words (“hi” and “mama”) at seven months, walked at a year, and was using two words together by 15 months (“all done”, “go bye”, etc.)

 

So why all this background info? Because when “typical” people look at those “other” people who do weird things like buy organic, avoid fast food, use essential oils, and clean with vinegar, they often think they’re slightly crazy and judge them. Right now, if you consider yourself a “typical” American, you’re probably saying, “No, I don’t!!” But I am here to tell you that you do. I know that I did. While I never outwardly judged anyone for their decisions, I thought that people who didn’t vaccinate their kids, who ate organic, who bought expensive non-toxic cleaning chemicals, etc. were just a little “hippie” and probably smoked too much weed at some point in their life. And I’m here to tell you (now that I’m on that “other” side), you judge us too.

So the background info is to show you: while you may view me as a “hippie” or “alternative”, I was once one of you. I never ate organic (or even really thought about what I ate except for how many calories something contained), I took my kids to McDonalds for a special “treat”, I vaccinated on the best schedule I could (which followed my doctor’s particular schedule), I was a staunch advocate of our medical system, I gave my children Tylenol before AND after their vaccinations to help ease their discomfort … because I wanted to do what was best for my family. And I did the best I could and cared as much as I could based on what I knew at the time. WE ALL DO THE BEST WE CAN.

 

So believe me when I say this: I understand both sides of the coin.

 

What led me to change? April 20, 2010. My son was diagnosed with autism.

 

Life Gets Hard.  Fast.

As I mentioned above, this was a child who talked, walked, and met all his milestones. He made eye-contact, he cuddled, he was a completely “typical” child. I had no concerns about him, and no one else voiced concerns about his development. On the contrary, a friend of mine who had a teenager on the autism spectrum confided to me when my son was 12 months old, “We were so worried about him with the rough beginning he had. But he is doing so well.”

We took a trip to Europe when my son was 11 months old, and we have several videos of him at this time (see the video in this article here). He was engaging with us, imitating, chatting, and so happy. He handled the days of travel well with only one evening of grumpiness when we couldn’t find a hotel and it was way past his bedtime … but otherwise, a perfect baby. Even our friend who was travelling with us commented on what a delightful child he was.

When he was 15 months old, on January 7, 2009, I took our son to the doctor for his well-baby checkup. He was doing very well, in the 25^th percentile for his weight as per his growth curve. I don’t remember many of our well-baby checkups but I remember this one specifically because it was the appointment where he would receive the MMR vaccine. And while I trusted our medical establishment 100%, this one gave me some cause for concern in my gut, as I had heard this vaccine linked with autism. Our doctor reassured me there was no cause for concern, but I remember feeling slightly sick when it was administered to him along with the Prevnar vaccine. I gave him Tylenol before the shot and after the shot to help with his fussiness and low-grade fever, and after crying for a while, he slept the whole way home (I drove around for several hours as he slept).

One week later to the day after he received his shots, his diarrhea started.

I noted this in his baby book: “Diarrhea”. No fever. No other symptoms. But this would be his new friend for the next couple of years, progressing to the point of diarrhea 8 to 10 times a day, leading to bleeding ulcers, skin burned off his little bottom, and us considering buying stock in Desitin because we were buying it by the vat.

I assumed (wrongly) that this must be teething diarrhea and didn’t give it much thought. I didn’t have much energy to really consider that it could be something else, as I was several months pregnant with my second child and was trying to manage both while keeping an eye on my blood pressure.

However, I was concerned that he lost all of his language. He just stopped speaking. I brought this up at his 18 month well-baby appointment (which sadly was not with our regular pediatrician but with one of her nurse practitioners; I still wonder to this day if our doctor would have caught this sudden change). I was told, “Boys talk later. Let’s re-examine this at his 2-year checkup”. I knew some boys (including my brother) who spoke a little later, so in my pregnant mommy-brain this made sense. I gave my little guy some Tylenol, and he then received his Dtap and Hib vaccines.

After this, he steadily worsened. The screaming began. The words were gone. He broke out in head to toe hives, for which he was given Benadryl, which relieved the hives. I assumed at this point the hives were a reaction to a food he ate and that the terrible twos were starting early.

At our son’s 2 year checkup, I again brought up my concerns for his speech. Our doctor recommended speech therapy. She also watched him as he absently wandered around her office, not interacting with anyone, opening and closing drawers and generally creating chaos.

It would be another six months before he officially received his diagnosis. By this point, there were no words, screaming and meltdowns were daily life, diarrhea was profuse (as in, trails around the house, exploding out both ends of his diaper to the point I would grab a towel to wrap him in and change him in the bathtub), and I also had another infant to take care of (and protect from his brother).

It was when my second son had a reaction to his 9 month vaccines (my usually very bubbly boy was completely absent for 2 weeks) that I started to wonder what was going on. That same month, my oldest son started Early Intervention for speech, occupational, and developmental therapy and was evaluated at a 9 month level for expressive and receptive speech (at age 2 ½). The next month, he received his autism diagnosis, which was confirmed 2 months later by a local child psychologist.

 

At this point, I had done EVERYTHING that the doctors told me to. When my child was diagnosed with autism, I turned to them for help and guidance. I was told there was nothing that could be done. We could try some speech therapy. But he didn’t even know the therapists were in the room.

In desperation, I started to research. I learned that some kids were having good relief of symptoms by having gluten and casein (dairy) from their diet. This made sense to me, as I had a child with chronic diarrhea. Wouldn’t food help? I wasn’t sure. I asked our local autism society chapter, and was told the diet was dangerous. This made no sense to me, as it was just food and substitutes could still give him a rounded diet. The only person who advocated for our diet change was our dear doctor, who told us to try it for a month.

Long story short: within a week, he had his first formed bowel movement in 15 months. At our month checkup with our doctor, he interacted with her for the first time, and she cried. Within 4 months, words like “mama”, “papa”, and “kiki” (his brother) came back, and Mama cried.

This led me to further research … and to where I am today.

 

The point of all this?

My point is this: you can laugh at me and call me crazy. You can tell me that vaccines don’t affect our kids, that organic food is a waste of money, that Round-up is healthy for us, that the chemicals in our environment are safe and don’t affect anyone, that medications like Tylenol and Benadryl don’t hurt anyone, and that everything that I’m doing for my kids is just a big waste of time.

You can also say that “bless my heart”, you believe in what I’m doing but that it’s just too hard and you could never do it.

I agree. IT IS HARD. All of what I did for my kids was hard, hard work. I’m tearing up just thinking about our journey.

But you know what’s harder? Your kid SCREAMING as you try to clean crap out of the ulcers that the acid in his poop has burned through his skin.

Holding your child down as he has yet another meltdown that day, as he tries to throw himself through glass. Having your hair ripped out, your nose slammed into by his head, the sweat running down your face …

The tears that you cry with him as your nonverbal son comes to you, shaking and exhausted, after an hours-long meltdown that he couldn’t control … and buries himself in your arms and sobs for the hurt he feels and caused, although he is not able to verbalize it.

The nights you hold him through partial complex seizures (which his specialist states were a result of his pertussis vaccination, a known side effect) as he screams in pain and begs you for help.

And through all of this, knowing that if your child continues to be violent, continues to be in pain, continues to lash out in anger … that someday he will be 16 years old, he will be big, he will be more than you can handle. What then?

So, yes, buying organic is expensive. Making my own cleaning products takes some effort. Yes, there are days I wish I could order take-out or pop a frozen pizza in the oven for dinner instead of cooking a healthy meal from scratch.

But do you know what is harder? What our life could be like if I didn’t do all this.

Picture this:

Today I would have an eight year old. He’s 50 lbs. and over 4 feet tall, but wiry. When a child with autism has a meltdown, they are in what is called “fight or flight”. This is a protective mechanism the body has, so if we are being chased by a lion, the cascade of responses in our body cause us to have super strength and super speed, shunting blood to our arms and legs, and allowing us to fight or flee. If I still had a child who had meltdowns, I don’t know that I would be able to keep him or our family safe anymore. I do know that his glass closet doors would still be off as they were in days past, and many of his toys would not be able to be in his room. I would possibly have to have medications to help sedate him, many of which have terrible side-effects. He would also likely have to be on seizure medications, the gentlest of which causes extreme aggression, thus adding to his problems. He would also likely not be verbal and not be potty-trained (because the diarrhea would continue to be an issue).

I would also have a seven year old with ADHD or worse. Perhaps he would be on medication as well. Between the two of them, our house would be constant chaos. We would not be able to go out as a family together, and I would be hard-pressed to find a babysitter. My husband and I would be stressed, tired, and at each other’s throats because that’s what happens when you’re stressed, tired, up all night (because my children never slept – they would still be up all night without dietary intervention), and with no time for yourselves.

I would be on blood pressure medication, because currently eating well and essential oils are helping me to manage my elevated blood pressure which has lingered since my youngest son was born. I may also be on cholesterol medication, as that too was elevating quickly. I would likely also be on an anti-depressant as I had severe postpartum depression, and with all the stress in my life and no natural options to turn to, I would need a lot of help to stay sane.

This is just a small snippet of what my life could be like if I simply accepted life the way it is.

Do you want to know what is hard? THAT IS HARD.

Do you want to know about quality of life?

Today, my eight year old passes as a “typical” child. He is bright, verbal, happy, and loving. He adores his brother, who is his best friend. He has an imagination, writes stories, gardens, cooks (he creates his own recipes, which are delicious!), plays with other kids, and is a grade level ahead in school. He tells me he loves me every day, and when he wakes up in the morning, the first thing he does is climbs in my bed for good morning snuggles.

In a few minutes, his brother joins us, and we start our day all warm and toasty together. They are both healthy and happy.

We take vacations every summer as a family. Anyone with a child with autism knows what a big deal this is. A different hotel every night, a huge disruption to our routine … and he handles it well. He loves trips! He has planned our next trip: he wants to go to Alaska to see Mt. McKinley. When I said the drive may be a bit much, he showed me how we could drive to Washington and then take a boat to Alaska (“which would save a lot of time, Mom!”).

When our friends were having difficult times, he took it upon himself to write them a note of encouragement. On his own, without me prompting them. When anyone or anything is hurting, he is the first one there to offer a hug and a smile.

 

So no, do not “bless my heart”, because my life is not hard. Life WAS hard, but it is not hard now. There are moments when we still have some difficulty because of the boys’ health concerns, but compared to life before, this is nothing.

Cooking nourishing foods has healed my family. Using essential oils instead of OTC medications helps to keep their body toxin free. Creating an environment at home that doesn’t harm their bodies has allowed them to grow and has freed them of many of the concerns that I had for them.

If you feel that healing yourself or your children is hard, you are right. It is. But you have a choice: it can be hard now and easier later. Or you can choose “easy” now (which is still hard, because even with medication and therapies, many children continue to struggle, and are non-verbal, and have meltdowns, or are hospitalized for psychotic episodes), and have it hard later, as you will continue to have the same problems, only on a much larger scale. Even if you have it easy now, and your children appear to be healthy and have no health concerns, please consider their long-term health and wellbeing and research simple ways to improve the health of your entire family. We all have to die of something, but I would rather die an old lady warm in my bed, then suffer with a manmade illness such as cancer in middle age, or die of heart disease in my 40s. I do not want that for my children either, and my giving them this now, I am setting them up for a lifetime of good eating and clean living habits: leading to energy, longevity, and health!

 

So the next time we go out to eat together, and you order your burger and fries and watch my kids eat their meat and veggies and a homemade treat that I’ve brought along, instead of worrying for the poor little deprived dears, I would like you to take a moment to consider how far they’ve come. We are in a restaurant together, enjoying each other’s company! There are no meltdowns, Mom and Dad aren’t chasing them around, and there will be no tummy aches afterwards! No screaming, no tears, no diarrhea, no therapy for hours and hours, no pain, no sleepless nights …

They are happy. They are healthy. They enjoy life. IT IS POSSIBLE!

 

 

 

~ Alicia