All Rileyed Up

Noelle Quero is the blogger/writer/activist behind the site My Healthiest Life, a review site of all natural products, and Jaden’s Journal, which is about parenting life with her husband, her daughter, and her son, Jaden, who has Down Syndrome.

I did this questionnaire with her last month during National Down Syndrome Awareness Month, but in true parenting fashion, we were both so busy, I’m only just now posting it.

1. Did you do anything to participate in National Down Syndrome Awareness Month?

I was involved in our local Buddy Walk, here in South Florida for National Down Syndrome Awareness Month, which went really well.

2. When did you find out Jaden had Down Syndrome?

We found out after Jaden was born that he ‘may have Down Syndrome’. Prenatally, I had all of the testing and Level-3 Ultrasounds which all detected a perfectly healthy, ‘normal’ baby. Jaden had NO prenatal markers for Down Syndrome. Jaden was born full term, perfectly healthy, with no health issues. He was able to nurse right away and was a very ‘atypical’ expectation for Down Syndrome. The Dr’s in the hospital were not sure if he had it or not because Jaden was missing most of the typical ‘features’ and ‘health issues’ associated with this. In fact, they had to keep him in the hospital 8 days to do a battery of tests. The hospital lost all of his initial ‘chromosomal’ testing blood work during this first week and were unable to confirm his diagnosis. We ended up taking him home, healthy, happy and not knowing for sure whether or not Jaden even had Down Syndrome. The diagnosis was actually not even confirmed until he was 2 months old. During those first 2 months we realized just how ‘typical’ and ‘normal’ Jaden was as a baby and was nothing at all like all of the ’signs’, ’symptoms’, ‘health issues’, and ‘developmental issues’ that were expected of him. In fact, he was exactly like his older sister developmentally and most of his milestones were hit early or on time. I am so grateful that we had the time we did to research and look up information on Down Syndrome because we realized that Jaden was a human being, a typical baby, and full of so much personality.

3. What is your first piece of advice to parents who find out their child has or will have Down Syndrome?

My first piece of advice would be to take a deep breath, forget anything you may have heard or seen regarding Down Syndrome, get all of the stereotypical images and references out of your head and remember that you will love this baby more than words will describe. Also, to immediately seek out information from reputable sources that are experienced with Down Syndrome as opposed to people who have very little up-to-date, accurate information to give you, which is typically the doctor delivering the news. There are a tremendous number of support agencies and parent groups now who are more than thrilled to hold your hand and walk you through any process or questions. This baby is waaaaaaay more typical, than atypical and this will probably be your biggest surprise.

4. Can you give a brief description of the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act?

The Prenatally Diagnosed Condition Awareness Act is a Bill that was written to support new and expecting parents rights’. For the last 40-50 years it has been a free for all in the doctor’s office as far as delivering information goes. Doctors and health practitioners have very little to no accountability when it comes to giving information to new and expecting parents. Basically, they can say whatever they want, whenever they want and no one will know the difference. This is an enormous problem when it comes to delivering any particular diagnosis to new or expecting parents. What happens now is this: parents are told their unborn baby may have ‘xyz’ problem and the follow up sentence (90% of the time) is the time frame they have in which to terminate the pregnancy. Parents faced with the diagnosis are given no support, accurate or up-to-date information regarding the diagnosis they are receiving. So, parents are usually frightened at whatever ‘xyz’ might mean for their baby, their family, their other children, leading to the decision to terminate the pregnancy, even the most religious parents.  The saddest part about this is that many, many prenatal diagnoses which result in termination were probably inaccurate in the first place. Thousands of parents each year continue on with pregnancies which were recommended as terminations by the doctors only to find their babies were perfectly ‘healthy and normal’.  This is a travesty with hundreds of pre-diagnosed conditions which are, most of the time, not life-threatening. Yet, the scenarios painted by the doctor or health care worker to the parents are so dismal and frightening, parents choose termination. This Bill will essentially help change this. Basically, this Bill, for the first time ever, is going to hold all doctors accountable for what they do and don’t say to parents. They will have to offer the most accurate, up-to-date information to all expecting parents upon immediate delivery of the diagnosis. They will have to offer all resources and phone numbers regarding the diagnosis as well and they will have to offer all sides of the diagnosis instead of only the worst case scenario. It is a major breakthrough for the Special Needs community.

5. How did you feel when you saw that Congress passed it?

I was ecstatic when Congress passed this Bill because I had worked very hard to spread awareness about it over the last few years. I wrote a petition specifically to help pass this Bill which spawned 3 other petitions from larger organizations. Together, we all helped get this Bill passed. Any parent who has ever experienced how doctors deliver news of a diagnosis or seen firsthand how the medical community reacts once they find out your child might have a diagnosis, can’t be less than thrilled that this Bill was passed. Doctors need much more education on how to deliver news to parents and it is such a highly neglected area in medical school. Doctors simply have no education on most of the prenatal diagnoses they are delivering in the first place so they are unable to accurately represent what the diagnosis even means for a parent. Doctors are also so used to terminating pregnancies every day, that they are so far removed from the emotional aspect of what parents really have to go through. This Bill will open the doors that have been slammed shut in all of these support organizations’ faces over the last several years. Now, the lines of communication will be wider open.

6. How many people did you get to sign your petition?

I had around 890 signers on my petition, all within the first few months.

7.  Tell me more about My Healthiest Life. How long have you been running this site?

My Healthiest Life is a website devoted to researching, reviewing and recommending 100% all-natural products to my readers. Out of a long time passion for health, fitness and nutrition, I became an avid researcher of ingredients and natural products. I also became more avidly involved once we saw the major correlation for Jaden and his own health. I started educating myself on health and nutrition around five years ago and was always the resident ‘advice giver’ to everyone around me. I decided to translate what I was already innately doing into a website. I also realized that not every Natural product was created equally. Because words like ‘Organic’, ‘Natural’ and ‘Healthy’ are used as loosely as possible now to market products, I decided to become more of a watch dog regarding these overused, often abused descriptions. I try and bring on the site only the ‘Best of the Best’ in all-natural products once I’ve reviewed the company’s manufacturing practices, ingredients etc. I also don’t recommend products with any chemicals, additives or borderline ingredients. I try to stay away from recommending products with sugars, fats and common allergens like soy, wheat, nuts, etc. I’ve found that there are so many highly ethical, moral companies really trying to put out high quality products which are good for us and our environment. It’s very rewarding, and truly a labor of love.

8.  Why should people visit it?

People should come to the site because one of the biggest bonuses is, you win FREE products! Most of the companies on the site love to give away FREE products for people to try, so they mail them to my readers once I give them the addresses! It’s great! And, there’s no catch. You just enter, and then you usually get a free product mailed to you!

9. Were you interested in nutrition before your son was born?

I’ve been interested in nutrition and the body’s ability to heal itself for as long as I can remember. I’ve always been very disillusioned by our current medical system and what they can do to help people. I do believe doctors and surgeons can without a doubt save lives and should always be used in emergency situations, however I don’t think they’re very educated on how the body prevents illness or heals itself from illness, 90% of the time from the diet. What most people don’t understand, because we’re not taught this in school, is that the body has the capability to heal and stay healthy if you give it what it needs. Unfortunately, if we eat typical ‘American’ food (ie, what is found in most grocery stores), we can’t keep our bodies very healthy. We also over-vaccinate our children, and I believe without a shadow of doubt, that by the time our children our 2 years old, we have already begun to destroy their totally undeveloped immune systems because of the onslaught of foreign substances and vaccines we give them. I do not believe in the vaccine schedules or in how young we vaccinate our perfectly healthy children. This has been the biggest hoax and lie of the last 30 years, without a doubt, all in the name of huge profits. Our kids are now sicker than ever, and the medical community keeps insisting that vaccines are safe! It’s truly a joke and it infuriates me. If you talk to all parents who don’t vaccinate and they will say that the children they have vaccinated are the sickest children in the family while the younger children they held out on, are the healthiest. This is not a coincidence. Vaccines are not a joke, can be very dangerous, and should be used with extreme caution.

10. Have you been enjoying all the samples? Which have been your favorite?

I love all of the samples I receive from these companies and consider it a complete bonus to try all of these amazing products! I love all of them, and of course, who doesn’t love getting things for free! My favorite so far are the Jurlique skin care line because it is 100% organic, they actually farm their own ingredients and they are the most luxurious skin care products I have ever tried! I love them, love them! Besides, skin care products are the one thing I usually avoid because the ingredients are usually really iffy. I usually only use cocoa butter or shea butter.

Thanks for taking the time to share your thoughts and concerns, Noelle. Again, here is where you can visit her:

My Healthiest Life 

Jaden’s Journal.

Recently, two celebrity remarks have generated buzz in the autism community—

Actress Amanda Peet said in Cookie magazine: “Frankly, I feel that parents who don’t vaccinate their children are parasites.”

Radio talk show host Michael Savage said: “I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they’re silent? They don’t have a father around to tell them, “Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.”

Peet apologized, and said, among other things, “I still believe that the decision not to vaccinate our children bodes for a dangerous future. Vast reductions in immunization will lead to a resurgence of deadly viruses.” and “In the fifties, vaccines were recognized as life-saving. My mom had polio and was quarantined when she was 6 years old. It’s so hard to appreciate vaccines now that so few children are dying from preventable diseases today, but that could all change if we’re not vigilant.”

Savage and his network have apologized, and defended his remarks with “Dr. Savage [according to Wikipedia, he holds a PhD in nutritional ethnomedicine] has clarified that his July 16th statements concerning autism were not directed at those who are in fact challenged by this horrible affliction, but were instead addressing efforts to broaden the concept of autism beyond those who truly are autistic to a broader “autistic spectrum” of behavioral symptoms which are also manifested by persons who do not suffer from autism, and his concern that many children are being misdiagnosed as autistic due to the subjective nature of autism diagnosis (due to the lack of known biomedical indicators, such as blood tests, to definitively confirm or deny the actual existence of autism). Dr. Savage has also explained his belief that there have been efforts by certain professionals and professional organizations to expand diagnoses of autism more broadly, for various reasons, and his concern that this victimizes and stigmatizes children who are misdiagnosed as autistic.”

The apology statement went on to point out that “The purpose of talk radio is to raise the level of public discourse by introducing commentary on controversial issues.”

So the real question is, why didn’t you guys just #@&! say that in the first place?

Commentary on controversial issues does not mean speak like a close-minded jerk. If you wanted to address the concerns of overdiagnosing autism or the importance of vaccines, you didn’t need to classify an entire group of people as brats or parasites to get your point across.

I especially liked (and by liked, I mean rolled my eyes) this blurb from Savage’s network’s statement concerning “his brief 84 seconds of commentary”:

“In the context of his broader concerns, it is clear that Dr. Savage’s comments were intended to suggest his opinion that, in the vast majority of cases, most children throwing tantrums, or refusing to communicate, are not autistic. Unfortunately, by condensing his multifaceted concerns into 84 seconds of commentary, the necessary context for his remarks was not apparent, and the few words he used to express his concerns were, in this instance, inartfully phrased.”

What “vast majority of cases” is he referring to? Children in general or cases of autism? If the former, duh, of course temper tantrums and refusal to communicate don’t mean they’re autistic. Who even thinks that? If the latter, how could he possibly formulate such an opinion without reading enough autism diagnoses to say “a majority of cases.” Here’s the criteria for DSM-IV Autism. Clearly, more than temper tantrums and refusal to communicate are necessary. Is the wording vague? Yes. Is there room for misinterpretation? Yes. Did a neurologist once explain to me that autism diagnosing was similar to art appreciation and that everyone views it differently? Yes. These are very important things to consider if you think your child has autism or you disagree with a DSM IV diagnosis, and I think Michael Savage would agree, but the seriousness of his subject was lost to his “inartfully phrased” comments. Is it just me, or are the words “inartfully phrased” the most ridiculous thing you’ve ever read? He called 99 percent of autistic kids “brats.” That’s not “inartfully phrased.” That’s rude, demeaning, insulting, offensive, generalizing, judgmental… take your pick.

What bothers me about media focal points like Peet said parasites or Savage said brats are the that they bury the real concern – children’s health – under name calling.

I don’t care about Amanda Peet or Michael Savage and they don’t care about me. They will insult me today and apologize tomorrow and I will be no different as a result. We do have a shared concern for the health of children, though. So the next time Peet and Savage have the opportunity to use their celebrity status to bring attention to something important, I hope they don’t waste it on an insult, er, inartful word.