Jay is my oldest son and this is the story of our journey, I have only touched on our story in the past, but I hope by telling our story now, other parents will have the courage to listen to their parental intuition and venture out of their comfort zone when exploring treatments for the sake of health and healing.
I did not have an ideal pregnancy, it was stressful. In retrospect I was very unhealthy and I ended up hospitalized with pyelonephritis. I was treated with antibiotics and pain medication, doctors assured me it was safe for the baby, but with my history I had my concerns.
This wasn’t my first kidney infection, they actually started when I was in my late teens, and with the first kidney infection also came my first allergic reaction to the antibiotic treatment. The cycle repeated, prompting doctors to explore whether there were structural issues with my kidneys that continued to cause me problems-there wasn’t and the issues continued, first the infection and then the reaction to treatment.
When Jay was born it was a routine delivery, so routine that I was discharged the very next day. What really strikes me about that time is how fast he grew, everyone commented on what a “football player” he was going to be. He was always over the 90th Percentile for height and weight at all his well-baby checkups, but I didn’t really suspect anything was going on until around his second birthday. He could say a few key phrases, but he wasn’t progressing, but I was about to give birth to his little brother so I just rationalized that maybe I was just imagining it, he would be fine, some kids just need more time.
Fast forward a few months and we decide to move from Florida to Colorado. At his first appointment with the new pediatrician, all the things that I had been trying to explain away-were pointed out, his weight, his behavior. It could no longer just be ignored, I knew it was time to do something. We had a referral to a Speech therapist and I had a mission, to do everything I possibly could to help him get to where he needed to be, emotionally, physically and mentally. To learn about his initial diagnosis of Sensory Processing Disorder , read an article I did awhile back, http://blog.enlightenedlotuswellness.com/2012/07/17/living-with-sensory-integration-dysfunction/.
At the time I was pursuing my degree in Alternative Medicine, a path I decided to take after conventional medicine couldn’t explain my chronic kidney infections, I knew it was time to walk the walk, not just talk the talk. Daily routines were hard to follow, everything was a chore, and all of us were stressed out. Something as simple as a trip to the public restroom often ended in tears, unfamiliar faces, the loudness of the toilets flushing, all added to his stress, and mine!
The first area I changed was our diet, I was familiar with The Feingold Hypothesis, which states, and “Hyperactivity can be triggered by synthetic additives – specifically synthetic colors, synthetic flavors and the preservatives BHA, BHT (and later TBHQ) and also a group of foods containing a natural salicylate radical. This is an immunological – not an allergic – response.” So I set out to eliminate all things artificial and synthetic in our diets.
The Strawberry experiment
Strawberries are actually what inspired me to switch to organic food. Jay loves strawberries and has since he was able to eat solid foods. He loves strawberries so much, in fact, that he could eat an entire pound in one sitting. After eating said strawberries he would get a red blotchy rash around his mouth. But our budget was tight and organic food was so expensive! So I decided to do a simple experiment, I got some organic strawberries to see if they produced the same kind of reaction the conventionally grown ones did- a red, blotchy rash around his mouth. I hoped that the rash wasn’t an allergic reaction, especially since he loved them so much, and it wasn’t, the organic strawberries DID NOT create the rash. I was sold, and that’s when we switched to organic food.
Since switching to organic, a happy side-effect, we all experienced was weight-loss. Jay no longer has any issues with his weight and no-one says he is going to be a football player anymore! Obviously, you are making better choices since organic food is grown without the use of synthetic pesticides and chemical fertilizers, although certain organically approved pesticides may be used under limited conditions. In general, organic foods are also not processed using irradiation, industrial solvents, or chemical food additives. And only a very small percentage of GMOs are allowed in organic products. Well worth the small added expense!
It took a long time to get a full diagnosis, and it was such a relief when it finally came. We had been for lots of testing from various agencies, but it was the very in-depth testing, we received from Children’s Hospital of Colorado that gave us the answers that we so desperately sought after. The main area of concern for us was the communication, it was very difficult for anyone outside of our home to understand him, which of course only added to the feelings of frustration and his acting out.
Formally he has been diagnosed with, expressive language disorder, Childhood apraxia of speech, lack of coordination, and delayed milestones.
What is apraxia?
To begin with, developmental verbal apraxia is a spectrum disorder. What this means is that there are no definite behaviors that identify its presence. Instead, a child is identified as having apraxia if he/she exhibits a number of characteristics that are believed to be highly indicative of apraxia. Because of this, no two children with apraxia are alike.
Additionally, although many hypotheses have been proposed for the etiology (cause) of apraxia, in reality, apraxia has a number of etiologies. Some of them are: genetic predisposition to motor sequencing disorders (family history), problems prenatally or at birth, differences in the rate of development or quality of myelination (covering or sheath for the nerve cells in the brain, which increases dramatically in the preschool years), neurological disorders, developmental delay, etc.
The different phases of motor planning, motor programming and execution are controlled by the coalition of various areas in the brain. A disorder in each of these phases may lead to different communication problems. The linguistic-symbolic planning phase is controlled by temporal-parietal areas and by Broca’s area. A disorder on this level may lead to aphasia. Motor planning is controlled by areas such as Broca’s area, the supplementary motor area (SMA) and areas 5 and 7 in the parietal lobes. A disorder on this level may lead to apraxia of speech in both its developmental and acquired form. Motor programming is controlled by areas such as the basal ganglia, the lateral cerebellum, the SMA and the fronto-limbic system. A disorder on this level may lead to certain components of dysarthric speech and possibly stuttering. Motor execution is controlled by areas such as the cerebellum, basal ganglia, motor cortex and the motor units in the muscles. A disorder on this level will lead to dysarthria.
Childhood apraxia of speech may be the result of an inability to learn and control motor planning of speech. The child may be unable to learn the core motor plans for all the different speech sounds of the language, to recall the series of motor plans from the sensorimotor memory during continuous speech, to identify the different motor goals of each speech sound and to sequentially and concurrently organize the movements for each speech sound and a series of sounds. These underlying problems may result in the inability to produce some or most speech sounds, to produce utterances consisting of a string of sounds, to produce a certain combination of sounds and to produce sounds accurately in long or unfamiliar utterances. The child may also exhibit struggle behavior during speech production. Within the context of this theoretical framework, treatment of childhood apraxia of speech should address the underlying problems in the different components of speech motor planning.
Additionally, children with apraxia do not have the opportunity to interact with peers and adults in a typical way, and so are at greater risk for developing/exhibiting social, behavioral, language, etc. delays and disorders because of the apraxia. (Apraxia information taken from http://www.apraxia-kids.org/)
In addition to the healthy diet and the reduction of chemical exposure at home, I have found a few products and techniques that have made my life so much easier and I would love to share them with you in hopes that they make your life even a little bit easier.
Kitchen timer- The kitchen timer is my best friend, we have a lot of issues with transitions and using the timer has alleviated a ton of meltdowns. Everything used to be a battle before the kitchen timer, leaving the house, getting dressed, cleaning up, any of these activities could trigger a full on meltdown. While using the timer did not completely circumvent all transition issues it has kept my sanity since I am not constantly fighting with him to do the basic necessities.
Essential oils- I saw the most improvement in his behavior when I introduced essential oils into our daily routine. I have used essential oils with varying degrees of success for many years. When I was first approached about therapeutic grade essential oils, I was skeptical, but I gave it a try, now I couldn’t be happier with the results! The use of the essential oils has given me a non-invasive way to help him with his self regulation and frustration tolerance without turning him into a medicated zombie. We have dubbed them the “happy brain” oils because he expressed that they make his brain happy! Mama is happy too, I now use the oils exclusively to support the health & wellness of the entire family and we have had amazing results. He is calmer and more focused as well as more open to trying things that may seem challenging or beyond his current skill set, where he once was rejecting affection and any kind of personal touch from any of us, now he snuggles with me daily. Also, his affinity to be without clothes has lessened, instead of stripping down as soon as we are in the house, now the clothing remains on! At least for a bit! 😉 If you would like to know more about the natural solutions that have worked for us, send me a message, I am happy to share the protocols that I have found effective.
My life has turned out drastically different than I had envisioned, but I wouldn’t have it any other way! I would love to hear about your stories, your journeys into health, and if you would like to discuss anything with me privately, please send me an email.
If you would like to know more about essential oils or how to get them at wholesale prices like I do send an email to firstname.lastname@example.org or call 720-588-0313.
**Note, I changed my son’s name to protect his identity.