An Explanation Of Autism By Award Winning Author Ellen Notbohm
Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute - the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look "normal" but his behavior can be perplexing and downright difficult.
Autism was once thought an "incurable" disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism's most challenging characteristics. Equipping those around our children with simple understanding of autism's most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.
Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly -- every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.
Mark Leland's Introduction To His "Missing Pieces" Video
Following Is The Story Of Nathaniel - The True Story Of "Missing Pieces"
On December 11, 1999 my youngest son, Nathaniel, came into this world,
a perfectly normal beautiful gift from God. With pride I watched him
meet all the normal developmental milestones. By eighteen months of age
he was naming TV shows and calling his brothers and sisters by name.
But he was also becoming a constantly sick child, going to the doctor
two to three times every week. There were unending fevers, ear
infections, and colds. He cried constantly, had a bloated stomach and
continually covered his ears with his hands.
Shortly after receiving
the MMR his left eyelid began to droop and his language disappeared. He
no longer made eye contact, could not attend to any task, and developed
many typical autistic behaviors. Local doctors finally recommended a
psychological exam at age three. The psychologist was the first to
mention the "A" word. A team examination at the University of Arkansas
Children's Hospital in 2003 resulted in the official diagnosis of
Autism.
When Nathaniel was three I became a single parent with
sole custody of my son. He was making no progress in Pre-K. I was
desperate to find help for my son. Through the Internet I located the
Northeast LA Autism Society and arranged a meeting with Lynda Huggins.
I was literally in tears as I asked how I could help my son. After
discussing Nathaniel's history Lynda urged me to take my son to a DAN!
doctor. She told me about an upcoming Mini-DAN conference in New
Orleans. I attended and met Dr. Stephanie Cave, a DAN! practitioner
from Baton Rouge. She agreed to see Nathaniel. In February of 2004 Dr.
Cave did extensive testing on Nathaniel. She prescribed several daily
supplements and said that I should put Nathaniel on a Gluten-free,
Casein-free diet immediately. Within days of implementing the diet
there was improvement and school reports reflected progress. In April,
when test results were completed, Dr. Cave started Nathaniel on a
chelation regiment to remove heavy metals from his body. For several
months, it was not an easy or pleasant experience for either Nathaniel
or me. I had to literally hold him down to get the pills down his
throat. But the progress I saw motivated me to follow Dr. Cave's
instructions to the letter. The treatment protocol healed his gut,
strengthened his immune system and removed the metals poisoning his
brain.
I was attending monthly meetings of the local autism
support group and began to feel that I was not alone in this battle.
When I mentioned my lack of success with potty training, I discovered
the wonderful book/video & bear of "It's Potty Time". Amazingly
after watching the video and reading the book, Nathaniel trained
himself within one day! I captured his joy at success with a Polaroid
camera and that picture served as a reinforcement, which he took with
him to school. I began to realize the communication power of pictures!
Since Nathaniel could not express his needs or desires verbally, I cut
pictures from magazines for him to show me what he wanted to eat, to
do, etc. Within a few months, his language began to return. It was as
if he picked up right where he lost his words. His first clear complete
phrase was "I love you Daddy" - what a wonderful reward for the months
of special diet and lots of pills! School reports included "speaking
more and more." By the end of that school year the school reported "You
need no progress report to tell you how well Nathaniel is progressing."
Imagine
not having the ability to express your likes or dislikes, your fears or
joys, what you do or do not want to do. How frustrating it must have
been for my son. But he found ways to get his point across - like
throwing three pairs of new shoes (which he obviously did not like) out
the car window as he traveled in his car seat behind me. He traveled
with me during the summer and once stripped butt naked in the middle of
a business meeting at a fancy restaurant. During our travels he knew
exactly where he had visited a Toys 'R Us store - months earlier and
pointed excitedly as we approached the correct exit. He had so much to
tell me - but could not speak the words. And there were many humorous
times. He decided the Blues Clues potty seat resembled a hat and a
hacksaw was required to remove it from his head. The noise of my
windshield wipers was evidently painful to his ears so he simply
removed them (with a screwdriver) and hid them from me. Yes he found
ways to tell me many things.
This past December Nathaniel
celebrated his sixth birthday. You could not have picked him out of the
group of kids as a child with autism. He was just a normal 6-year-old
joyously tearing into gifts, eating lots of pizza and cake and playing
appropriately.
Throughout the past three years I have been
blessed with wonderful support from family and friends and the skilled
medical guidance of Dr. Cave. Nathaniel's grandmothers have followed my
every direction for diet and pills and each instruction for working
with him. In the last two years (and since six weeks after beginning
chelation), Nathaniel has had only one doctor visit. That was for the
removal of his tonsils. That doctor voiced his opinion that Nathaniel's
droopy left eyelid might have resulted from a minor stroke (at around
age 18 months).
There were many stressful times. It was
especially difficult as a single parent to hold a job requiring
extensive travel, arrange all the doctor visits, follow all the
doctor's instructions, and endure the bizarre behaviors. Many times I
felt that I was at my rope's end. After one particularly long and
exhausting day, when I finally got Nathaniel down for the night, I sat
down and began to write. The words that flowed from my mind that night
surely came from above. "Now I lay him down to sleep, I pray Dear Lord
my son could speak." As I thought about what I had written I decided to
contact my life-long friend and recording artist, Mark Leland. Together
we completed those words to write the song "Missing Pieces".
Many months later we completed the video of "Missing Pieces" and I
know that God has led me through this experience for a purpose. It is
my hope and prayer that the song will generate funding to assist
families in obtaining the biomedical treatments that can help these
children. My miracle son is proof that recovery is possible. The song
tells of the pain of watching a child slip into the autism abyss and of
a parent's determination to pull him back. Now I know there are so many
more like Nathaniel who need our help to win this war. Together we can
help them make it through. The missing piece is me and you.
Please view the following video:
This is Missing Pieces by Mark Leland (For Full Screen click on the icon next to the Volume Control)
