Never Say Never!

Submitted by Mika on Thu, 09/24/2009 - 20:50.

Each of us has a laundry list of things we say we will never do. Amazing how time, experience and circumstance can change your opinion on interventions and therapies you once believed to be of no value. When my son Jacob was first diagnosed with autism almost twelve years ago, I searched high and low for answers, options and opportunities that would improve his ability to communicate and function. Dietary changes and the introduction of nutritional supplements was the first of many interventions I was introduced to when I began looking for ways to positively impact his ability to communicate, learn and reduce negative behaviors. I eagerly began to read anything and everything that was related to diet, supplements and its impact on the nervous, immune and digestive system. I was surprised at the number of articles that I found online, published in various medical journals that spoke of the therapeutic changes that could result from dietary modifications. The idea of diet, herbs and supplements positively impacting health was not a foreign concept to me since my mother had taken supplements for years as she battled chronic health issues. I quickly decided to integrate supplements like Super Nu Thera (a multivitamin with added B6 and magnesium) as well as removing gluten and casein from his diet. I was surprised and ecstatic when I began to see changes like increased eye contact and how he responded to me and others in our family. For the first time in a year he would actually gaze into our eyes when we spoke to him. It wasn’t that all too familiar look of him appearing to see through us that we had grown accustom to over the previous months. It was genuine eye contact that gave way to an acknowledgement of what each of us was thinking in relationship to the moment. I had prayed each and every day that the twinkle that once shimmered in his eyes when I called his name months before would return and by all accounts it had begun to emerge once again.

Like any good supplement taking, diet modifying parent, I vowed to always rely on natural choices when addressing any nutritional or behavioral concerns that my children would have in the years to come. I did use various medications that were suggested by my son’s gastroenterologist and allergist but beyond that I was committed to only natural alternatives. As years of giving supplements, modifying his diet and incorporating ABA, speech and occupational therapy passed I found myself always asking what more could I be doing. It seemed Jacob had reached a plateau and while I was thankful for the gains he had made I still wanted more. I realized that as well as I thought he was doing with each day that passed, regardless of how many targets and objectives he mastered the gains were still deficient to the skills typically developing peers were acquiring. The ultimate or should I say “Holy Grail” we sought was to see large enough gains made in his ability to communicate that would equip him to live as much of an independent life as possible. He could talk, read and write but his ability to express his thoughts in complex sentences was inhibited and directly contributed to his growing level of anxiety. It was extremely frustrating to have come so far and yet feel so incredibly lost, without direction.

I expected to deal with outbursts and anxiety, I mean really, what child doesn’t get ticked and throw a fit when they want something they can’t have or don’t know how to say what they are thinking. Combine the normal emotions any child experiences with an inability to specifically express every thought, opinion or comment they have and of course they would struggle more than the average child. At this point I had further limited his diet as well as tried diets based on different principals. I had tried amino acids, individual herbs as well as herbal blends with little success. Ok, this is where I must point out that over the years of working in the field of nutrition I have seen many children and adults lives radically changed with the use of nutraceuticals (vitamins, minerals, amino acids and herbs) alone. I learned after the first three years of living in the world of autism and biomedical interventions that even if five children all diagnosed with autism are all given the same interventions and therapies, it in NO way means they will all progress at the same rate or reach the same milestones. I began to hit the internet and purchase books once again in search of information and answers that I had not investigated and ultimately found myself immersed in the world of pharmacology and the medications being used to treat behavior disorders. This was a huge step for someone who said she would “NEVER” put her kids on prescription medications to address attention deficits, anxiety and behavior issues. I had always thought that it would be considered an easy way out if I even contemplated a prescription medication. I quickly learned acronyms like SSRI, MOA, as well as many others. It was enlightening and scary all at the same time as I read many parents stories in how their children had responded to the many medications.

After great deliberation and assessing every negative reaction as well as possible benefit I identified one medication that I believed had the potential to positively impact the areas we were looking to address. We began to introduce Buspar also called Buspirone in small quantities. Buspar is an older drug that is used for anxiety and has minimal side effects compared to many of the newer drugs. It is not first on most physicians list of suggested medications due to the fact that the full potential or impact of the medication may not be seen for 30 days. I was thrilled that within a week and a half I witnessed the intensity and degree of Jacob’s anxiety attacks lessen. This by no means had meant we reached our destination of temper tantrum free trips to Target. It meant we had found just one more piece to his personal puzzle that together created a respectful quality of life. Many years have passed since that first prescription was filled and yes, as we have vaulted into the world of puberty, leaving the stages of adolescence behind we have added other medications as well as nutritional supports.

For almost twelve years now I have provided information in some mode or manner to parents, professionals and teachers on interventions like dietary modifications, nutritional supplementation, applied behavior analysis, and more recently prescription medications. For the past ten years I worked as an outside sales rep, customers service agent, technical support and certified nutritionist for the Kirkman Group. I absolutely loved working with the parents and professionals I had come to know so well over the years! In recognizing the vast need for information on how supplements and prescription drugs can work together or possibly interact I chose to accept the position of Director of Sales and Services Nutraceutical and Specialty Compounding with Dougherty’s Pharmacy in Dallas, Texas. This opportunity allows me the ability to merge information regarding nutritional supplements and prescription medications. In an effort to serve their customers in an innovative manner Dougherty’s is committed to providing information that support’s a “Life Improved”. The concept of merging the two worlds of Natural/Holistic interventions and Pharmacology is not new but the level of commitment that Dougherty’s is showing to their diverse customer base is. In just six weeks I have gone from getting my toes wet to quickly being fully submerged in the daily activities of the pharmacy as the learning curve of a new work environment lessens. The weeks have flown by and as I am constantly thinking of ways to serve our customers, bring in that hard to find product or provide life changing information to a knowledge thirsty recipient. My focus is absolutely on how this position and the decisions I make will impact those I come in contact with. Periodically my thoughts briefly question how will Dougherty’s and the knowledge I learn from my coworkers impact Jacob’s life. Each day I look forward to learning something more than the day before! I know there are many years ahead that will require me to constantly reevaluate the supplements, medications and dietary selections Jacob is using but I can honestly say that the comfort I have found in no longer saying “Never say Never” has freed me from the level of fear I once had for my son when I thought of his future in this world.

When you have an open mind and an open heart and maintain your ability to think independently and out of the box you just never know where it might lead you.

Comments

What Schools need to do

Schools need to focus on what works healthwise and not pay so much attention to the behaviors. They need to keep allergies in mind when talking about diets.

Case in point: There was a girl in fourth grade who was allergic to milk. The school knew this, but the lunchroom monitor teacher, insisted she drink milk at lunch because that's what the other kids were doing. She drank the milk even though she knew and the school knew that this was dangerous for her. When she got off the bus that afternoon, she couldn't remember what happened past lunchtime that day(!)

The parents were upset that her short termed memory was knocked out due to an allergic reaction to milk, and since there was no follow up to this story, I don't know if the parents sued the school or not.