A poem by Emily and Mommy about our visit to the park today.
Horse
Outdoors
Moss
Enormous Dragonflies
Sand Volleyball Pit
Trees
Emily Helping
Amphibian Frog
Dozens of Cattails
Pond
A Mommy Duck
Running Sahara
Kids
Wednesday, 8 July 2009
Tuesday, 7 July 2009
Even after the neurologist maintained that a chromosomal deletion was insignificant, he recommended we talk to the genetic department to get more information on the findings. We waited months with sleepless nights to get in to see him, finally we were there.
The intake personnel asked why we thought we were there to see the geneticist, "Our daughter is diagnosed with autism and the blood work showed a chromosomal deletion, dad has the same deletion, mom has a different one, and the neurologist thought we could learn more about this from the geneticist."
Without hesitation he replied, "You will learn that these deletions are insignificant and not related to the autism. And, although, we know that autism is a biological disorder not an environmental one, we do not see any evidence of genetic causation in your daughter’s case."
My mind started mulling over these words…
‘Biological disorder’….
‘Not environmental’….
‘Do not see any evidence’…
He proceeded to take a thorough 60 minute case history. As we discussed our family history, I started to relax; somehow having the medical model finally listen to our story seemed to be relief in and of itself. But then, we had to wait another 45 minutes before the geneticist came in to see us. At some point I said to my husband, "If there is no evidence of biological component here… why are they wasting our time?"
Both kids were restless, hungry, and ready to bolt as the door opened. "Hi, Mr. and Mrs. Richardson…. I am ‘Dr. Geneticist’…. why do you think you’re here today?" Again, I explained what I knew of the deletion and his reply shocked me, "Over 80% of the time I can look at a child’s profile and determine the cause of the autism. We don’t see any of those indications with your daughter’s case; however, even though we know that autism is biological, we haven’t been able to know precisely where it is coming from. We are doing continued research to determine how it is biological and which specific gene it resides on."
WHAT?!? How can the geneticist say that there is autism is 80% biological/genetic but not have scientific evidence where the ‘autism code’ resides?
I craved validation, "If you are not finding any biological component linked to my child’s condition, is it safe to say that her condition is related to environmental toxins?"
Prepare yourself for what we heard!
"Some individuals are blaming environmental factors. I have not seen enough evidence that indicates that this could be valid…. There is no link between autism and environmental toxins." He continued to discredit the alternative venues of treating autism like chelating, GFCF diets, and other DAN! Doctor protocols. He even went as far as to state, "Chelation is killing kids while the people recommending it are making gobs of money."
I couldn’t believe my ears, but then again, his science and research is funded through this paradigm (psst…. Guess who’s making gobs of money too?). But to outright attack it befuddled me. I admit I question medical efficacy, but I also invite debate so that we might learn more about both approaches. It is when they find unison that maybe, just maybe, we will begin to progress towards finding a cause and more importantly find a cure.
Many are making ‘gobs’ of money off our children’s deficits from both paradigms. But, right now, my reality is spent in the sleepless nights wondering how we are going to pay for the co-pays, huge deductible, and the portion of the bills that the insurance company hasn’t deemed medically necessary.
The thousands of dollars in bills that we have accrued in the past four months is money that could have been utilized in a much more productive manner. The inconclusive tests results, countless appointments where the physician told us we are already doing everything they’d recommend and the referrals to additional hospital/medical services have racked up a bill and wasted valuable time that could have been utilized towards the recovery of my daughter’s autism.
Monday, 6 July 2009
Dear Mr. President,
I can’t post-pone this letter any longer. There is a pestilence occurring among our children in America and we need your help!
My daughter was diagnosed with Autism Spectrum Disorder (ASD) last Halloween. Progress is slow, but steady. We do feel restricted in the process of addressing her needs due to the law not requiring the inclusion of autism on insurance policies, the narrow-mindedness of some deemed professionals in the industry, and the lack of financial backing.
Mr. President, many parents and professionals have differing opinions about how to address the needs of these children and what causes ASD. I am sure you are aware that this is a hot topic and tempers flare. I am not going to address the causation in this letter, but am going to acknowledge that I quietly (and often) wonder if the two injections of the RhoGam inoculations mandated on me during pregnancy caused our daughter’s disability.
I am going to also point out that since implementing the medical model during the past few months our medical bills have surpassed our personal budget. Unfortunately, I think that Autism has become an industry rather than an epidemic. It infuriates me that many are getting rich off of the woes of our children. But, this isn’t about me and the need to find someone to blame. I have made peace with our circumstance, and thank God that he entrusted me with this challenge. (He must have recognized something amazing within our family construct to bless this family with such an amazing journey.)
There are others I am most certain that have been called to action by a higher order as well. For instance, Angela Warner—a military mom of four (2 with ASD), is an inspiration to each of us on this journey. Her drive to alert you, Mr. President, and the mother of your children, Mrs. Obama, about this epidemic and how it is affecting our military families is inspirational.
Men and women who have committed their lives to protecting ours, are fighting an even bigger battle and dealing with even greater grievances on their home fronts as well. I am not going to pretend to understand what is like to be a military family and face autism, this you can learn by accepting her invitation to meet in early October. Until then, you can read more about her bravery and endeavors at http://www.autismsalutes.com/.
Age of Autism, a daily web newspaper of the autism epidemic, recognizes Angela as an Air Force spouse, mother, and advocate for our children. Today, I am asking that you encourage Michelle Obama to meet with Angela to have a discussion about what American families are going through.
It won’t be long before the 1 out of 150 kids with ASD become of age… that will bring its own set of challenges. If we don’t act now, more money and resources will be required to meet the activities of daily living for this fast growing population. I encourage you to help the children of today for a better future tomorrow. I, personally, have signed an open letter to you on the web encouraging you to look into the environmental factors that could be contributing to this debilitating disorder.
Thank you for your action!
Susan Richardson
Mother, Wife & Autism Advocate
1 Cup Brown Rice Flour
½ Cup Quino Flakes
1 Tablespoon Baking Powder
1 Teaspoon Pure Sea Salt
½ Teaspoon Xantham Gum
1 Heaping Tablespoon Raw Sugar
1 Egg
1 Teaspoon Vanilla Extract
1 Cup Original Almond Milk
1 Cup Strawberries chopped (optional)
Combine rice flour, quino flakes, baking powder, salt and xantham gum.
In a separate bowl, whisk egg with vanilla and almond milk. Add this wet mixture to the dry.
Fold in fruit if desired.
Use a tablespoon to transfer batter into a pan over medium-low heat. Allow the cake to bubble then flip, remove when golden brown on each side.
Serve with Earth Balance Natural Buttery Spread- original and 100% maple syrup.
Sunday, 5 July 2009
Today I intend for all parents, grandparents, spouses, siblings, teachers, neighbors, and friends to have the free will to determine what is in their own best interest and the freedom to act upon it.Freedom… Independence… Liberty… Choice… Equality… Free Will...
… To choose what actions to take in the prevention and treatment of illness, disease, and conditions without fear that the opposition of political agendas will interfere.
… To choose how and whom to worship without contempt from others whose views may vary.
… To choose whom to love and to be within a committed relationship without worrying that the law prohibits the consummation.
… To choose how to protect the earth from industrial harm and take action without Big Money to interfere.
… To choose peace, love, and honesty over hatred, ignorance, and intolerance in every act you take.
Thursday, 2 July 2009
Purposeful parenting… that is exactly why I started writing this blog! To be purposeful is to demonstrate mindful intent.I talk about this in my book The Mother Consciousness:
"At the onset of my first pregnancy and well into my motherhood, I had learned to mindfully provide physical, emotional, nutritional, and spiritual nurturance form my younglings…
"In the early twenty-first century many mothers are beginning to awaken to and become involved in movements such as holistic mothering and attachment parenting. Both movements promote peace, connectedness, and health within the family construct in order to promote the highest quality of life for the children (and the parents). It is my suggestion, that all woman have this drive within their souls and that the lessons of their foremothers reside in their collective unconscious; and when these lessons are heard and honored that is when true conscious mothering talks place."
During the month of July I ask you to pause and become more conscious in the daily mothering decisions you are faced with… become more purposeful in everything you do with your children! From the smallest task of tying shoes to the monumental task of fostering self-esteem be mindful in the moment.
Other than Purposeful parenting, July also is recognize as
Anti-Boredom Month
Cell phone Courtesy Month
Copious Compliments Month
Baked Beans Month
Bison Month
Herbal/Prescription Awareness Month
Culinary Arts Month
National Doghouse Repairs Month
Foreign Language Month
Hot Dog Month
Blueberries month
Recreation and Parks Month
HAPPY JULY!!
Wednesday, 1 July 2009
We went to Grandma’s house for a week… the children had a blast splashing in the pool, playing with Grandma, visiting the Zoo, and even going on an African Safari complete with hand feeding buffalo, giraffe, monkeys, camels, and more.But, truth be known, it was Daddy’s Father’s Day present; a whole week to himself to do whatever he pleased… What filled his spare time didn’t concern me; I trusted him explicitly to appropriately utilize this heartfelt gift to whatever he deemed necessary to fill his spirit.
What did matter… was that he was able to step away from the daily responsibilities of juggling a family, a demanding career, and the many struggles a man faces when his child experiences autism.
He didn’t have to listen to, "When are you coming home?" a thousand times because I was so exhausted from the demands of the day and needed relief. When those 4:45 calls start… he knows he will have to jump out of the role of professional right into the role of daddy just so I could go lay on the bathroom floor for 10 brief minutes to recharge my own batteries.
He didn’t have to attend to my technical incompetence after he just spent a day at the office listening to a bunch of whining adults about their technical woes. I am sure all week he had a sense of relief when he came in through the door knowing he wasn’t going to have to trouble shoot why my outlook address book wasn’t syncing with my mailbox or why I couldn’t print the Webkinz adoption certificates.
We were tempted to get him a shirt instead that stated, "No I won’t fix your computer!" … somehow a week off seemed more appealing to his nature.
I am sure he indulged in a few cigars and drank a High Ball (whiskey and 7-up) while listening to nothing... quietness, I am sure, enveloped him. Certainly, this was a foreign sound from the ten years of child driven noises and 21 years with a woman who loves to talk. I am sure he basked in this delight!
(Yes, I suppose I am a bit jealous… but, I’ll get over it.)
I am just as certain that it was not all pleasure. I know my husband and know that in the recess of his mind he still worried about whether or not the therapy and doctor bills were paid… Whether or not our child was getting enough nutrition and the appropriate services… Whether or not he would ever be able to hold a meaningful conversation with his daughter… Whether or not the girls would be provided for if we were to die... Maybe, he even contemplated whether or not it would be easier on him if he left us (like in 85% of marriages that are faced with autism).
But, I am comforted that by Sunday morning he emailed me saying, "I miss my 3 women! When did you say you were coming home?"
I learned that by the time Sunday night arrived he desperately missed us. I suppose I am reassured that he found himself yearning to rummage around for Red Bear so Emily could sleep and that he missed the nonstop chatter of Sahara having to recite an entire scene from Shark Tales before she could nestle down for the night. I am glad that the house at times was too quiet for him.
I have come to terms that there are moments that seem so hard and painful in the world of autism that it seems easier to run away … but that is why each of us need this type of break now and then, to not only recharge our batteries, but to shatter this illusion and acknowledge that the grass is perfect on this side of the spectrum.
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