The old princess was quite disappointed and sad that the trusted pediatrician had failed to send her young boy to the sage immediately upon the diagnosis. But rather than beheading the trusted pediatrician, the old princess showed compassion and gratitude. After all, the trusted pediatrician had saved the boy’s life when he was just an infant and was not eating.
The old princess traveled with the boy and his trusted tutor to the sage high on the hill. When they arrived, they were impressed by the size of the building. It had a scientific label “Neuroscience Center”. Inside many, many people were very busy. Directions were given to the old princess, the boy and the tutor to wait by the fish tank near the stars and moons on the door. They did.
Eventually, they went through the door. The boy was weighed. 49.6 pounds. He was measured, 46 and 3/4 inches tall. They were sent to a room with a 9 on it. A nurse came in and took a long and detailed history of the boy. She asked what the old princess hoped to accomplish.
Stumped, the old princess was speechless. What did she hope for? If she said a cure, she knew she would be viewed as ignorant or oblivious to reality. But she really wanted to say “a cure”. Instead, she said she wanted to make her boy the best that he could be. As soon as she said it, she felt she had failed the boy, as though she was making some ridiculous admission that he was less than perfect. Perhaps, he was in the eyes of others, but not in his mama’s eyes.
It was as though with that simple question, the illusions she had created with “alternatives” like hyperbaric oxygen chambers, shattered at her feet and she was left facing something she did not want to face – reality.
Her little boy has an incurable disability. The old princess had to realize she was just a mom. She did not live in a fairy tale land. Autism has no cure. There are ways to cope with the disability. There are ways to lessen the symptoms. There are no hyperbaric oxygen chambers, no B12 shots, and no transcranial magnetic stimulation that will cure autism. She was staring back into the forest.
The wise sage walked in the room. Despite feeling as though she would fall back into the midst of the forest, the old princess listened. Disheartened, she heard him say that there is no evidence that any of these alternatives work. He told her of charlatans and snake oil salesmen wanting to promise cures to extort money.
The old princess listened as he told her about how the ugly concept of “politics” comes into play, even in the field of autism. She learned that respected leaders sometimes say things work to fuel hope to people who hold donation money. Respected leaders who have to raise funds to do research or keep a facility operational will tell vulnerable people who want to believe in “alternatives” what they want to hear to garner donations to keep real research and real treatments alive.
She was saddened to hear what she knew in her heart. She was sad to face it. She wanted to turn away from reality. Turn away from the reality of no cures – no fairy tales. Then came the anger.
The old girl was angry that not a single soul who had contact with the little royal from the time he was diagnosed to four months ago told her of the existence of the sage. People have traveled to this facility from as far away as Europe for the chance to meet with the sage. The sage has written this book called Autism and its Medical Management. Yet, the old princess and the little royal were within the same kingdom and no one told them to go see the sage…
Next came the good…
There are tests that must be run that serve as a foundation from which the many, many variants of causes for the autism can be narrowed. Treatments will depend upon the findings of those tests. First comes the EEG to rule out seizure that may occur during sleep or which can be auditory in nature.
Yes, auditory. No one has ever asked the little royal to take an EEG. The sage told the old princess that the sleep disturbances the boy had from birth to age 2.5 when diagnosed with asthma may have been seizure activity. At the time the boy was treated for pneumonia at age 2.5 and diagnosed with asthma he was given prednisone. Prednisone is also used to treat seizure activity and could have been instrumental in stopping that activity and allowing the boy to sleep. The EEG will provide more information. Seizure activity can appear as “spaced out” or staring episodes combined with a perception that the child is not listening.
Next, we discussed genetic testing. I never understood the basis for undergoing the genetic testing nor did anyone else ever explain how it would help the little royal. The website for Sutter Autism Medical Treatment Center provides the answer this way:
“Since other medical conditions or problems may mimic or add to severity of autistic features, the child neurologist can help evaluate a child for these issues and better determine if a regression has occurred. The other conditions may include genetic disorders that may have some autistic type behaviors, other learning or language issues, underlying brain injury or epilepsy, and sleep issues. Appropriate medical screening can then allow more appropriate medical diagnosis and treatment to begin so better therapy and outcome goals can be attained.”
Altogether, the appointment with the sage gave the old princess hope. He knew things without asking. He provided hope in the form of conventional medicine and realistic treatments that can give the little royal the best world he can have without a fairy tale.
Yes, that “old princess” was me.
I finally feel like we are on the path that will lead us out of the deep forest and into the light. We have some work to do. I have no idea how much screaming the little royal will do when his blood is drawn. I have no idea how hard he will struggle to remove the EEG electrodes that will be placed on him to remain for 24 hours. I do not know what the results will yield or where were are headed. I do know now, it’s the right direction. Finally. Maybe there can still be a happily ever after, even without the fairy tale.