Woody’s Greatest Hits

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Salem is telling stories.

The communication barrier is still pretty thick, but in the past 15 months, Salem has progressed from using echoed and scripted speech to answering simple “yes” and “no” questions to actual role-playing with his sister. Lately, he has been telling stories– nothing elaborate, but I will catch him narrating an original scene in limited detail. When he’s tired, he will get stuck on a loop and repeat the same phrase over and over and over again. When this happens, Clark and I say, “The record is skipping.” For instance, the other night, we were laying in my bed well past his bedtime, and with much passion and conviction, Salem observed, “Mommy, Woody is a big man… and Woody is a big man. And then… Woody… {long pause}… is a big man.” After a while, the repeated white noise lulled us both to sleep.

Woody’s Greatest Hits has made one more crack in the wall between us, and that is reason to celebrate.

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Operation: Risk Management– Five Things to Consider Before Vaccinating

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When you have a child with Autism, one of the first questions on everyone’s mind is, “Are vaccinations the culprit?” Before I answer that… a few disclaimers: The following is by no means medically exhaustive. I am not a DIY expert on the subject, nor am I an anti-vaccine extremist. This is simply a slice of our journey.

When Salem was born, I was paralyzed by the polarization surrounding the subject of vaccines. I had read enough to know that there were risks on both sides, but I wouldn’t let a needle-packing nurse near him until I had made up my mind in good conscience which risks we were willing to take. I opted out of the Vitamin K and the Hep A shot that they give most children before they even leave the hospital. I figured he wasn’t going to be sharing any drug needles before his two-week check up, so we could at least wait until then. Two weeks came and went. Nine months later, we had not given him a single vaccine until finally, I asked myself the question:

“If my child contracted anything that could have been prevented, would I be able to live with myself?

When we arrived for his nine month check up, his pediatrician said that unless we vaccinated Salem, he could file a “medical negligence” claim against us. He enforced a “catch up” schedule and said that there were no a la carte options. In other words, we couldn’t opt out of the chicken pox or the drug-needle sharing vaccine. It was all or nothing or risk being labeled “medically negligent”. So, we prayed.

And then we pricked him.

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Ours isn’t the Autism story of, “one day he was here and the next he was gone” after the Ped administered the DTaP. Salem’s developmental delays appeared over time. Do I think that the vaccines caused Salem’s Autism? No. I think there is a buffet of genetic and environmental factors at play here, but when it comes to the influence of immunizations, I agree with one of Salem’s doctors:

If a child possesses a spark of neurobehavioral vulnerability {ie. a genetic propensity to a developmental disorder like Autism}, vaccinations are like gasoline. They exacerbate the situation.

Hindsight 20/20– would I still have chosen to vaccinate Salem? That depends. More importantly, I would sift my decision through a risk management filter that I like to call, “The Five D’s”. {Alliteration makes me happy… go with me on this.}

1. Diet— Does breastfeeding eliminate any and all risk of contracting an infectious disease? Certainly not. Does it reduce the likelihood? Yes. What deserves even further consideration is the presence of food allergies and/or intolerances. There are loads of test options to determine if your child should avoid certain foods, but here’s a test that’s absolutely free and void of controversy. Ready? Walk over to your pantry and open the door. Choose a box of oft-purchased cereal or crackers and read the ingredients. Can you pronounce them? Are your shelves lined with product ingredient lists that say, “Enriched flour”, “high fructose corn syrup”, and “Red 40”? You don’t have to be a nutritionist to know that white flour, white sugar, sodium, dyes, and preservatives are crappy for you much less for your child’s developing brain. In addition, carefully researched and selected whole food supplements are important to consider as well.

2. Degree of Exposure— Does your infant/toddler attend day care or pre-school? Are you a stay-at-home mom that lines the grocery cart with a quilted coozie and keeps anti-bacterial wash on your key ring at all times? Do you live in a heavily polluted, urban city? Does your child have regular contact with someone who frequently travels internationally? The degree of exposure varies for each child and will most likely change over time. Harmful exposure is unavoidable, but we moms are faced with making a judgement call based on our respective environments and the level of protection we need to provide for our kiddos.

3. Development— This is tricky one. Barring any glaring disabilities that appear before or shortly after birth, most babies achieve specific milestones within the same general time frame. Rolling over, crawling, walking, talking… etc. A child can pull off these feats without a hitch and yet still possess a neurobehavioral disability. Salem’s developmental clues were primarily speech and sensory-related. How was I supposed to know that I had been pouring gasoline on Salem’s development since he was 9 months old when the evidence of a disorder would not appear until age 3? Which leads me to the fourth “D”…

4. Delay— Part of Operation: Risk Management for the Beasley children is to delay vaccinations until the blood-brain barrier closes {around age 5}. If all was sparkles and bubbles in our house and there was no sign of any genetic vulnerabilities, I would still insist on holding off on vaccinating until…

A. my child was no longer nursing.
or
B. my child was enrolled in daycare or pre-school.

After that, I would insist on single doses, spaced out within the maximum time allowed during which I would WATCH FOR SIGNS OF DEVELOPMENTAL DELAYS AND AVERSE REACTIONS LIKE A HAWK.

5. Doctor— This is all fine and good, but the first four “D’s” ultimately hinge on whether or not you have a pediatrician that is willing to work with you. Does your doctor educate you or intimidate you? Do you get the sense that your child is just another little patient, or is his pediatrician willing to customize his diet and his immunization schedule, or suggest alternative options? For instance, have you ever heard of an Antibody Titer Test? Neither had I. This is a blood test to determine whether your child has sufficient antibodies and is therefore immune to a disease that is on the standard vaccination schedule. You mean my kid might not need all those boosters? No kidding. In my limited experience, these docs are hard to find, but they do exist.

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So, what if you are like me and you’ve moved from Operation: Risk Management to Operation: Damage Control? We have a diagnosis, so now what?

1. Date Around– Find a pediatrician that is willing to customize an approach to fit your child’s unique needs.

{oh man, here she goes with the D’s again. Yup.}

2. Delay any further vaccinations.

3. Detox– This involves a complicated series of tests to determine your child’s level of exposure to heavy metals from… you guessed it… vaccines that results in dietary changes and a liver support protocol and yada… yada… #itmakesmyheadhurttoobutwelcometomyworld.

Okay, so that’s more like 8 “D’s”. But you get the idea. I believe vaccines save lives. And yet, I do not believe in a one-size-fits-all vaccination plan that optimally benefits every child. The question, “Should I vaccinate my child?” is an important one that should be weighed carefully, approached holistically, and answered with the help of medical professionals who are willing to customize a plan that fits your child’s evolving needs. Above all, remember that as a parent, you have options. We won’t choose right every time, or even a lot of the time, but until our children are old enough to choose for themselves, {or until the government tells us otherwise} it is our job to choose what we think is best for them. So pray, plan, and proceed with confidence, and I promise… no more alliteration…

… for now.

Waiting to Exhale: A Conversation About Fetal Testing

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{Image via Miss Jamie Elizabeth}

I probably need to have my head examined for exploring a topic that will inevitably peeve half the female Facebook population. Nevertheless, I recently asked a few friends and readers if they underwent genetic fetal testing during their pregnancies. Here are a few of their responses:

Ashleigh said:
“Since I struggle with worry, I didn’t want to spend a majority of the pregnancy concerned– especially since the tests aren’t always right.”

Hollie said:
“I didn’t see a reason to get a “heads up” of any test results early. I put my trust in God, and lived by faith, and ‘what will be will be’.”

Abbie said:
“There is no instance when I would consider aborting a child, so to spend the money, let alone my emotional investment, on this testing would seem a mere and unnecessary stroking of my curiosity.”

Alexis said:
My job was to create a safe and healthy environment for my baby to grow and develop. I didn’t see the point in having genetic testing done. The outcome would remain the same.”

Kristy said:
Many people base their decision on whether or not they continue a pregnancy on early genetic testing. For me, even a detrimental prognosis would not have altered my decision… I am pro-life, and I would carry a baby as long as possible, regardless of what any genetic test says.”

Elizabeth said:
“We wanted the ‘cooking’ process to be as natural and with the fewest tests possible…Our decision was to let the process of development happen and we will ‘cross that bridge when we get there’ regarding the types of challenges we will face as a family.”

Jennie // Bun in the oven{Image via Andria Lindquist}

I too am among those who voted “nay” to fetal testing and for all the aforementioned reasons. Pregnancy afforded me nine magical months of anticipation from everything to eye color to the sound of that first infant cry. I drove Clark half insane over name choices and nursery patterns, cloth vs. disposable, breast vs. bottle, epidural vs. Glutton For Pain Delivery. Call it “hormones” or “nesting”, but I was gaga over my unborn munchkin and no unnecessary test result was going to spoil that for me.

Genetic experts admittedly cannot predict congenital defects with ultimate certainty. They simply hope to educate parents, and yet the vast majority of us {myself included} don’t want to be made aware of any potential abnormalities. Ironically, we live in the Age of Awareness where every other T-shirt and rubber bracelet gives voice to another helpless victim of injustice. Unless I have the sympathetic capacity of a cyborg, I will join the discussion about extreme global poverty or human trafficking. I will pledge and petition to raise awareness for a starving child in rural Africa, but when it comes to my own family, my own unborn child, my own incubated hopes and dreams, I don’t want to know. Why is that?

Perhaps it is because I have never woken up in the wee hours contemplating first names for a child born into extreme poverty. I have never labored over the decision to fully vaccinate a victim of child trafficking. Am I heartless to admit that? Or is there something that has to happen to a woman in the delicate process of becoming a mother where she must first become helplessly addicted to her child if she is ever going to have a prayer of becoming a decent advocate for her child’s condition no matter what congenital injustice befalls him or her?

Take for instance the injustice of Autism: If you had asked me a year ago to acknowledge Autism Awareness Month, I would have attended the rally, “liked” the page, ran the race, and bought the T-shirt. But now that I am living with it, I don’t need a poster or a bracelet to remind me of the excruciating fact that it exists. I am aware of Autism during mealtime meltdowns that result in Salem screaming at a near deafening decibel level while reincarnating into one of the Orcs of Middle Earth. I am aware of Autism when I watch him run laps around the produce section chanting the twelve tribes of Israel. I am well aware of Autism when he falls into an inconsolable heap at the cheering conclusion of “Happy Birthday”.

Next thing I know, I am wondering if I had been given the option of knowing that Autism was in the cards for Salem, would I have done anything differently? Let me say for all times’ sake:

MY QUESTION HAS NOTHING TO DO WITH TERMINATION AND EVERYTHING TO DO WITH PREPARATION.

Would I have taken advantage of the extra time to store up the emotional fortitude necessary to raise a child with special needs? Is that even possible? Would I have focussed more on educating myself rather than obsessing over which shade of green bed sheets to purchase for his crib? Would I have given him a better head start if I had been given a better heads up?

My quest for insight led me to one final chat with my new friend, Yvette. Her children are in my son’s special needs preschool class. I thought surely she would share my hindsight suspicions of the value of fetal testing after having delivered a premature set of twins who, much like my own preschooler, have their own onion of developmental delays which she is courageously peeling back one tearful layer at a time. She empathized with my line of questioning, but she too decided against fetal genetic testing. She described the current agonizing anticipation of whether or not her child is going to fulfill the clinical predictions or overcome the odds of a looming diagnosis. It is this “waiting to exhale” {as she so eloquently stated} that ought to be overshadowed by the anticipation of a child… a child that has a first name and a personality and likes and dislikes and unique features… all of the things that cannot be defined by a diagnosis. As she spoke, I realized that by first becoming a fierce lover of our child then and only then are we qualified to grieve and advocate on behalf of our child’s condition should one arise.

If you have not already de-friended me for tiptoeing {yet again} on such a sensitive health topic, I thank you for joining me in a discussion that has helped me to personally find rest in the deeper awareness of myself as a mother.

Love the child.

Loathe the condition.

God, help me always distinguish between the two.

Think Different

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Image via TRPrints Etsy shop

When faced with a challenge for which there is no foreseeable resolve, I transform myself into a front-row student of the Solution. I can’t help it. I have spent much of the summer reading reading READING my way through a file box full of titles– topics ranging from cutting-edge therapies, to specialized nutrition programs, and yes, the war cries of those who believe vaccinations are the root cause of both autism and Al Qaida terrorism. Yet, much like the bear cub that recently wandered into a suburban Sears department store, I have found myself roaming through volumes of doctoral theories in feeble attempts to understand this thing called ASD (Autism Spectrum Disorder). Then, before I can help it, my amateur brain has trespassed on the property of experts who are way smarter than myself. Suddenly, I am barreling through aisles of fancy medical terms and brain foods and testimonials and toaster ovens and women’s lingerie until someone comes along and shoots me with a tranquilizer dart!

Today, I explored some Etsy therapy to avoid Certain Brain Implosion. It was a fast-acting reminder that pretty things make me happy, and BONUS when I stumbled on a pretty thing inspired by the late Apple Genius, Steve Jobs. In all of my mental-department-store-obliteration reading, I knocked over some interesting articles that discuss whether or not Steve Jobs was autistic. The Aspergians says he was (kettle?), and the more reputable blogs devoid of annoying pop-up ads say he wasn’t (although he was known to obsess over things like how many screws were in a lap top case). Perhaps this is not enough to label him ASD, but it is a cozy thought to consider that he saw the world different from the other 97% of human thinkers… not unlike my three-year-old. I have read so many words in recent weeks that it is no wonder if I develop blurry vision because of it. And yet, in all of my reading, only two have helped to make it more clear.

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…and so we will.

Holland

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Image via ::Elena::

A little perspective this Monday afternoon…

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley