Thinking Out Of The Box

            Several years ago, our church presented my dad with  a gift on his birthday. It was a plaque with a little gold box attached to the front of it. On top of the box was a little gold stick-figured man. The little man was leaning forward and resting his chin in his hands ( you may have seen it in a Sky Mall catalog). The plaque read "Thinking out of the box". This message was significant, because my Dad had been preaching about "thinking out of the box".

 The other day I was listening to a woman, Donna Gates (age 60), speak about the women of this generation. She said that the women of this generation are not willing to blindly follow and do whatever their doctors or experts say. The women of this generation are willing to go, find, and do whatever it takes to heal their children.

One day  while in our pediatrician's office, I asked the nurse practitioner if Annabelle's extreme lack of nutrition might have anything to do with her developmental delays (If you read the first post you would know that Annabelle has always eaten very little, if any).

            She scrunched up her nose and said, "No. Those thing are usually permanent from birth. Food doesn't really have anything to do with it."

            Interesting. . . . .  Isn't that why we put DHA in infant formula, infant cereals and prenatal vitamins????

Imagine the possibilities, if one doctor over the last 3 years would have advised us to give Annabelle Cod Liver Oil, or any other supplements for that matter. . . instead of implying that she was simply spoiled and picky.  Now that we know Annabelle has a Sensory Integration Disorder, and possibley STILL has reflux . . Is it possible that she would have developed at a steadier rate???

            Her brain was essentially starving.

           The following is an excerpt from generationrescue.org.

Childhood Neurological Disorders (NDs) are typically diagnosed by professionals with psychology and psychiatry backgrounds. Parents are often told that their child's diagnosis is the result of genes and is psychological in nature. Typical "psychological" manifestations of these NDs in children may include delayed speech, lack of eye contact,  impaired or non-present social skills, shyness, perseverative behavior (doing the same thing over and over), delayed gross or fine motor skills, sensory integration issues (sound and touch sensitivity, etc.), not responding to one's name, inflexibility with transitions, and major, often unexplained changes in mood.

 Yet, the physical or medical issues that our children often share are rarely noted or discussed. Typical physical manifestations of chldren with NDs may include food allergies and eczema, general gastrointestinal distress, constipation and diarrhea, immune disregulation, and sleep disturbances.

Typically, proper testing would also reveal high levels of environmental toxins relative to neurotypical children.


What has happened to our children? We believe our children's bodies are overwhelmed by a combination of heavy metals (mercury, lead aluminum), live viruses (particular from their vacccines), and bacteria. These toxins serve to slow or shut down normal biochemical pathways in the  body and lead to the physical and mental manifestations we call NDs. Perhaps the best description of what happens to our children that we have read is Autism: A Twisted Tale of Virus and Thimerosal, by Dr. Amy Yasko.


Biomedical intervention for NDs is based on the belief that the psychological symptoms of NDs are a product of the physical issues the child is experiencing and that addressing the physical issues will lead to an improvement in those psychological symptoms. (We were very pleased to read the recent cover story in Discover Magazine that clearly spells out that autism is "not just in the head" but may actually originate in the gut and environmental toxins.)


The ultimate goal of biomedical treatment is to remove environmental toxins from your child's body and repair  the damage that has been done.

Neurological Disorders in children are growing at a rate  well in excess of population growth and are not the result of better diagnostic criteria.


And yet, the popular press is constantly spreading the same tired myths about autism and other NDs. Namely:
- There is no known cure.
- Recovered children are almost never acknowledged despite their growing numbers.


I will be posting about nutrition, cleansing, Annabelle's symptoms and progress, and any formal diagnosis. I personally have gleaned so much from other mothers who have posted their child's symptoms and what has helped them. While there is a huge list of symptoms for autism, Annabelle only has a few of them. As for the physical symptoms associated with children on the autism spectrum, Annabelle has all of them. Doctors do not talk to you about these physical symptoms and you won't find them on the conventional list of symptoms. 

As a parent, you are your child's advocate. Don't be afraid to look outside of the box. 


Diagnosis: We are still on that long wait to see the neurologist.  

Update: We have an appointment with a DAN (Defeat Autism Now) doctor on the 15th of March! So excited! These doctors test the children for allergies, sensitivities, and toxins.  Three weeks!

Resilience

When asked to name the blog, the first thing that came to my mind was "resilience". Somewhere in my memory this word was waiting to be used. The only time I remember seeing the word was when I read a book written by Elizabeth Edwards titled "Resilience". Maybe I associate that word with strong women, such as Elizabeth Edwards, or maybe I associate it with the difficult circumstances that have forced her to be strong. . . infidelity and terminal cancer to name a few. When I did a search on the word this was the result...

re·sil·ience

1.

the power or ability to return to the original form, position, etc., after being bent, compressed, or stretched; elasticity.

2.

ability to recover readily from illness, depression, adversity, or the like; buoyancy.

When I read this definition, I wanted it to be prophetic. . . .

You see, since March 6, 2007, every day has been exciting, strange, crazy, scary, or just plain frustrating. On that day my first child was born - Annabelle Karen Flowers, 4lb.2oz. and 17 inches long. Annabelle was and still is, very beautiful. All of our nurses kept going into the NICU to check on her. She had the cutest red lips. Women get their lips injected to look like Annabelle on the day she was born :)

Annabelle was very healthy aside from her low weight. They kept her in the NICU for 8 days because she was not able to keep her body temperature up. Finally, after what seemed like forever, we were able to take Annabelle home. The entire time she was in that nursery, I would not let myself cry. . . even when I had to endure the stress tests (putting her in her car seat and watching her heart rate drop). I told myself that I would not cry, because I must be strong for her! There was not enough time to cry. I promised myself that I would wait until this was all over. So, as I had promised, the day she was released my parents drove us home, and after they left I locked the door and sobbed for about 10 minutes . . then we took a nap :)

Unfortunately for my husband, we had to keep the apartment HOT. Annabelle was wrapped in several blankets and we slept with the lights on. The NICU nurses warned me over and over, "If she gets cold, she is coming right back to the NICU. We see babies come back all the time". I was terrified of taking her back to that place where I couldn't even hold or feed her if I wanted to... where they fed her formula that she was highly allergic to when I wasn't around.

During Annabelle's first month, her weight doubled to eight pounds. She had horrible reflux. Everything came right out her nose making it next to impossible for her to breathe. She slept sitting up so she would not suffocate. Over all, everything was O.K.

People constantly said, "She is so good. She is the best baby. She never cries!"
On reflection, her constant quietness should have been our first signal that something wasn't quite right. . . she was our first . . how were we supposed to know?

At 4 months Annabelle began to rock her head back and forth. Caleb, myself, and everyone else, thought she was dancing. After all, it was more pronounced when there was music around. She also started to do some sort of high pitched hum.

At 6 months, we relocated. For 18 months, we were unable to find a local doctor who was accepting new patients. . . unbelievable, right? We took her to the emergency room several times. The E.R. doctors told us that we should make an appointment with her primary care physician, but good luck on finding one. . even they knew that nobody was taking up new patients. . . one doctor said, "since there aren't any doctors accepting patients, we'll probably see you back her in a few days". During this time, Annabelle was chronically sick. She coughed till she vomited for four months.

At 12 months, Annabelle weighed in at a whopping 14 pounds. Her doctor (our original doctor in Puyallup, WA) flipped! He refused to believe that she would not eat. At this time, she was still only eating 2 to 4 oz. of formula every 3 hours. He told us, "Put butter on everything. . put cream on everything . . give her whole milk!" I reminded him, "Remember when she had milk before, she was projectile?" He said, "Well now she is a year old. . all babies are allergic to milk".

Desperate to get as many calories in her as I could, I began to give her whole milk, sometimes with an ounce of cream. I would spend my entire day in front of the computer with Anna next to me in her high chair, while I put peanut butter on those little star puffs and fed them to her. It was all she would eat. I tried everything . . I tried every kind of baby food, constantly . . . I tried pureeing our table food . . we tried pizza, ice cream and pudding. Nothing! She would clamp her lips together really tight and turn her head. I would try to force the spoon in and she would spit it out.

Her stools became very hard and large . . she would bleed and scream. . this continued till she was two.

Now Annabelle is almost 3 years old. She still barely eats a thing. She has continued to rock her head and she is still not talking. She has tubes in her ears, but continues to have chronic ear infections. She has a lot of repetitive behaviors.

I listen to the stories of moms who have been in my situation and come out with their child intact and communicating. One of my biggest dreams for her is that she will be able to sing like me. For now I would settle for just being able to hear what's on her mind.

We are on a long wait list to see a pediatric neurologist. For now, we are going to blog about our experience, our journey. I am reading and learning so many things about diet and toxins in our environment. I believe the Lord brings people and literature into our lives to teach us. I hope that you will find all of these things interesting and learn from our experience. We are also believing for a complete healing for Annabelle. Maybe not the miraculous, instant variety. But possibly by meeting the right people, reading the right material, and eating the right diet, all in God's perfect timing.

While Annabelle will always be perfect to us just how God made her, as parents, our main concern is her overall health and comfort. For this reason, we believe in taking a 'whole body' approach to her wellness. That is, developmental delays and social oddities can be the result of a "starving brain". A "starving brain" may be caused by food allergies, food sensitivities, vitamin deficiencies and environmental toxins.

We look forward to sharing our trials and triumphs with you, and would love feedback and advice.