Sometimes you hear a story that you just HAVE to share.
A few days ago I got an e-mail from a friend who relayed a story that both lightened my heart and brought me close to tears. It’s the story of one of his co-workers and the desperate struggle of a man and a woman trying to rescue their only child from the effects of a misunderstood difficult condition: autism. Below is their story of victory. May it be a blessing to you.
We became concerned with Evan’s development at about the age of 2.
Abnormal behaviors included:
- intentionally banging his head against tile floors with no indication of pain
- over-fascination with parts of an object, like playing with the wheels of trains and cars rather than the cars/trains themselves
- stimming and obsessive behaviors like opening and closing doors for 20 minutes or longer if uninterrupted
- speech and language delay, and displays of echolalia (ability to only repeat what’s heard, rather than answer a question or express a want or need)
- social withdrawal (complete avoidance of other children on the playground, preferred playing alone)
- sensory issues (over sensitive to loud noises, didn’t like playing in sand, etc)
- extreme melt-downs/tantrums
- screaming and strange noises in the middle of the night
- didn’t know how to play with toys correctly
- no imaginary play
- regression when sick with even just a cold
- memorization and verbal repetition of story books and videos
- no back and forth gestures (i.e. no pointing or waving bye-bye)
- spacey, inattentive, and seemingly unable to hear us at times when his name was called; he often appeared to be in his “own world”
- unaware of others’ feelings
Evan’s primary care physician dismissed our concerns, noting it was still early in his development, and “boys often develop more slowly.” Thus, we were without guidance from our trusted pediatrician. We feared autism, and so we sought more information on-line. The recognized symptoms of autism seemed similar to many of Evan’s odd tendencies. Via the Arnold Palmer hospital, we were given the names of three specialists in our area who would give us another look and opinion.
After 2 hours of questions and observations with a new doctor, Evan was diagnosed with mild to moderate autism. Our worst fears were realized and confirmed. Our boy, our only child, was suffering a disorder from which he might never recover. The news rocked us to the core. Our seemingly normal expectations of little league, school, birthday parties and the like felt crushed. For weeks we cried, neither of us could focus. Falling into depression would have been easy. But instead, we decided tofight.
The diagnosing physician ordered an EEG and MRI (to rule out any brain dysfunction) as well assome blood work. He also advised we seek speech and occupational therapy. Finding a rehab center, especially one that took our insurance, seemed a monumental task. Furthermore, it was difficult to know what kind of choice we were making. Just getting someone to respond and answer our questions was amazingly difficult, and it took weeks to gather the information we needed to choose. We feel lucky to have finally landed at a place we are now very fond of.
We heard from many that early intervention is critical; and we heard it so often, we could imagine the clock ticking and felt terribly stressed in our inability to find quick answers. The great urgency kept us up all hours of the night researching, scouring for more information, searching for answers as to why and looking for possible treatments beyond what therapy could offer. The internet is full of amazing information and hope. Beware, it can also be a dark, endless rabbit hole through which only more questions arise and false hopes stem.
We were given a book to add to the volumes of reading material we had already accumulated. In this book are accounts from families like ours, who, through the help of special doctors and others on their own, recovered their children. It gave us new-found hope in real recovery for Evan. A follow-up tothis book, and our most highly recommended read, is “Healing and Preventing Autism” by Dr. Jerry Kartzinel and Jenny McCarthy. To date, it is the most concise, enlightening, digestible and helpful resource we’ve come across. In our opinion, it is a must-read and can be a terrific launch platform for all who are faced with this horrible epidemic and hope to overcome it.
Armed with terrific new information and guidance, we charted our course in a biomedical approach to healing. First, we began the GFCF (Gluten Free, Casein Free) diet. Seemingly impossible, we bought cookbooks and worked our way into it. Within a month of achieving this diet, Evan’s speech, attention and motor skills improved remarkably. The obsessive/compulsive behaviors with the doors eased upconsiderably. He even stopped banging his head! When we slipped from the diet, he relapsed. When back on the diet, he recovered again. We are convinced this works for Evan. We are also convinced it fails for many others because of the extreme difficulty in totally eliminating casein and gluten from any diet. It takes vigilance and total devotion, and many seem to fail to grasp the idea. One parent told us they do the gluten free and casein free diet stuff too…they found GFCF cookies. NOTE: IT’S ALL OR NOTHING.
Second, we found a new primary care physician who not only understood the bio-medical approach to autism, but supported and equipped us in our efforts. Per his orders and a biomedically based testing laboratory, extensive tests of Evan’s blood, urine, stools, and hair uncovered some amazing new information–he suffered from coexisting clostridia and yeast intestinal infections, deficiencies in vital nutrients, as well as likely mitochondrial issues. These lab results became our road map. Now we needed a specialist who could navigate it.
“Healing and Preventing Autism” talked about DAN doctors. “DAN!” is an acronym for Defeat Autism Now. We were overjoyed to find a handful of these certified doctors in Florida, 3 within 2 hours of us. We studied up on these doctors and made a decision, then waited 3 more months for an appointment with this highly regarded specialist. It was now 9 months since Evan was first diagnosed…seemingly an eternity. The ticking clock in our heads was growing louder, sounding more like a ticking time bomb as precious time expired.
With the lab reports findings, the specialist prescribed a list of supplements to begin. More and significant improvements were made, but progress always plateaued. Finally, the addition of one more supplement launched Evan on an upward trajectory towards his recovery from autism. The difference was so notable that on one wonderful Tuesday, Evan’s school teacher pulled mom aside and said excitedly, “Whatever you are doing, DON’T STOP!” That same afternoon after Evan’s regular speech therapy session, the therapist remarked about his terrific improvement the “past couple of days.” Even the neighbors who had come to know Evan the past 2 years were amazed at his rapid development.
This is where we believe speech therapy had its greatest impact. Evan was now focused and aware, his brain was engaged. With the help of his speech therapist, words, phrases and sentences we’d never heard from him before began to flow from him in a matter of days and short weeks. Two months later, his specialist (a man typically short on words himself), declared Evan “an unusually quick turnaround.” To date, Evan no longer displays symptoms of autism.
What you will hear over and over and over again to great frustration is, “Every child is different.” This is perfectly true and accurate. We’ve learned autism is not itself a disease, but a variety of symptom of other underlying problems, often multi-faceted. Some “autistic” kids are found to be suffering from brain seizures. Other unfortunate “autistic” kids are found to have large amounts of toxic metals in their systems. Others like Evan have significant intestinal infections that cause the “leaky gut” syndrome you may have heard about. Some are diagnosed with low mitochondrial activity/function. And still others exhibit auto-immune disorders, which may be a result of some of the preceding problems. As such, you can see why autism is so hard to address, and so hard to treat. The cause is often elusive, and there is seldom a magic bullet!
Occupational therapy helped significantly with Evan’s sensory issues and motor skills. His integration into a classroom with typical children dramatically improved his social skills. And although the symptoms of autism have diminished, we still face medical challenges to overcome, specifically: the lab measured intestinal clostridia and yeast imbalances, obvious gluten and casein sensitivities, perceived mitochondrial issues, as well as the resulting vitamin deficiencies.
The past year and 9 months were perhaps the longest in our lives. Dad’s job suffered, our marriage came under great stress, and our savings were tapped. But Evan’s recovery may well be our lives’ greatest achievement. Today, we are perhaps the happiest parents on earth…the parents of a bright, happy, fully functioning, four-year-old boy who is the love of our lives.
So we share this with you to give you hope and some guidance.
Caution: there are never any guarantees of success.
Remember: there is no certainty in anything, except in not trying.
God bless you and give you hope.
The proud parents of a wonderfully recovered boy, Evan.
NOTE: Any book purchase referral revenues will be passed along to Evan’s family.