Never Land is a Dangerous Place...

Here are ten things I was told my severely autistic son would never do:

1) Your son will never speak if he doesn't have functional language by the age of five.

Done, at age 12. He uses new words daily.

2) Your son will never come home if he ever goes to a residential treatment program.

Done at age 11. I have to admit though, that we dragged him home after he was sexually abused and half starved there. He actually got worse there, behaviorally speaking.

So we trained ourselves to provide education and treatment, and tailored our goals for David aroundwho David is, and what David might wish to learn. Then, we directed our son's treatment at the cost of 140,000 and growing.

It was the best thing we ever did for our child.

3) David will never communicate meaningfully.

Done at age 11.5

4) David will never learn to read.

Done.

David does not read like most people do. He spells his answers and communicates on a letter board or keyboard. He learned to read letter by letter instead of in the "sight word" method most of us use.

5) David will never show understanding beyond a 2 year old's level.

You be the judge.

David's favorite book is Stephen Hawking's "A Brief History of Time."

David just passed a grade level science test with a grade of 95. In spite of the fact that he's nonverbal and severely motor impaired.

6) David will never be able to dress himself, cook a meal, use household appliances.

Sigh. Done, done, and again, so done. And my little hunk is very adept at putting together well coordinated outfits.

7) David will never be able to control violent outbursts or aggressions.

Done, done,and done again.

8) David will probably never be able to write his name

Done. He types it, too.

9) David will never have an original idea.

David wrote a stunning and insightful poem in response to Bill Stillman's book, Autism and the God Connection. Mr. Stillman was so moved by it that he mentioned it in the foreward to his upcoming title, Heart Savants.

10) David will never learn a meaningful vocation.

See the stunning necklace at the head of this post?

David has made necklaces like these and dozens of others equally as beautiful. All because we knew to things David could do. String a bead on a cord and imitate patterns.

So, why is it that were we so successful in helping our son progress when multiple experts failed to help our child?

First, we never took that one way trip to Neverland, even when things our son's future looked hopeless.

Second, while experts were so busy telling me what my son could not do, I started by working with the things that I knew he COULD do.

Nobody can do everything. Nearly everyone can do something.

By standard measures, David still tests as severely retarded and is deemed unable to live a "productive" life.

Whatever.

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For Ryan

Ryan Didn't Have to Die

The developmentally challenged child in the video link above killed himself as the result of "Mean Girl Syndrome". This beautifuly boy looks and carries himself so much like my youngest son. Today's entry is for Ryan.

I hope more parents will begin to realize that "net nannies" and keyloggers are not only powerful tools--they can save lives. Use them before it's too late.

Hippocrates is Crying

Too many people with autism die at the hands of the people who love them. Contributing to this travesty are those medical professionals who perpetuate the outdated belief that there is no help to be had for an autistic person enduring neurological agonies.

There are certain places in every parent's heart that they would prefer to remain buried. These are dark places, populated by bits and fragments of memories that do not fit with our conceptions of ourselves, of our devotion to our families, of the sometimes overwhelming force of our love for our children, and of our duty to keep them safe from harm. Dangerous places, even--places born from moments of pervasive exhaustion, strained hopes and desperate circumstances.

I remember a time, a fleeting glimmer of a second, when I pondered the possibility that my first born son might be better off dead. I remember that the thought struck me at the end of a day exactly like the two-hundred and some odd days before it, when my little boy would bang his head so often and with such vehement fury that the blood would course from his nose. I remember that his doctors, his teachers, my in-laws, and my friends really didn't believe me when I told them that someone in my home might well die if help did not come soon.

I remember a day when I sat in my new home with every stitch of furniture upturned, the mirrors shattered, the pictures fallen, and every visible expanse of wall punched through with hole after gaping hole. I remember watching my son shove his hand inside of one of those holes to examine the underpinnings of his world, and drawing back a fist full of blood. I worried and fretted over what would happen to my family when the din of my son's duress caused a concerned neighbor to summon social services, realizing that no court in the world would believe me when I told them that a fifty-five pound child inflicted this most recent adrenaline induced cataclysm within the space of a night. It's not like I didn't try to tell anyone who would listen---its just that nobody could realistically conceive of such a thing. So, I took videotape, snapped pictures, and made recordings documenting our visit to Hell--just in case. Truth was, none of that painfully gathered evidence could accurately portray the misery my beautiful son, his siblings and I lived through during that year.

Then came the night when my belief that most doctors are good and dedicated professionals died. I remember leaning against the outside of my locked bedroom door at three o'clock in the morning, curled up in fetal position to fend off my son's blows, and with blood running out my nostrils and my mouth. I stood sentinel there because that door was all that protected my two other children from the thrashing, biting, wraith that had possessed my son. I remember the frightened sobs of his siblings who cowered together on the other side of that door because they feared that their brother would strike out in his agony and kill either them, or me.

That was the night when my son's doctor quit answering our distress calls as there was nothing more he felt he could do for my son. I remember the next morning when I counted out eleven pills, each of them designed to help my son control his behavior, and falling to my knees begging God to grant my baby boy just one hour of something that might pass for peace. I remember the bottomless ocean of guilt I drowned in as I doped my child for his own safety. With each pill I forced down his resisting throat, I wondered how long his little body could withstand the pharmacological battle for control raging inside of his little brain.

I remember what the bowels of Hell sound like. I can't forget my son's agonized shrieks which came so shrill and incessant that my eardrums vibrated in protest. I despaired at my utter inability to do simplest of things that mothers do to comfort children when they are ill. I could not hold my child, sing to him, or simply be near him, because it seemed my every breath served only to stoke the flames of his fury.

I remember the desperate efforts of my aged mother and father, trying so hard to help when nobody else would. Together, we tried to hold this little writhing boy down as he seemed dead set on orchestrating his own demise. I remember staring into the bottomless black pools of my baby's dilated pupils as they consumed the familiar blue rings of his irises.

I think I nearly understood that day why some have wrongly mistaken autism for demonic possession, for many of the reported hallmarks are the same--the flaring nostrils, the trembling hands, the thrashing limbs that struck out at horrors which none but my child could see, and the likes of which only Hell's darkest demons could conjure.

Most of all I remember the day when my youngest boy, also autistic, fell down a spiral staircase at his big brother's hand. I remember holding my flailing,rage-driven son basket style in my arms to keep him from throwing himself through a window while my other child screamed in frightened horror. I remember my little girl running for the phone to call her Grandma and Grandpa back over. "Help, Mimi, help us....". My little girl hadn't even turned ten years old yet.

I remember thinking during the cacophonic din of this incessant misery, that we could not go on. I remember thinking that if death was all that could bring an end to my baby's suffering, then so be it. If sending my child back tot he God who made him meant I must walk into Eternity behind him, then I would, for I could not conceive of living on knowing I had harmed my own child.

But for the grace of God, the sun finally rose, and my son fell asleep for the first time in five days. My black moment of hopelessness lifted. I found a doctor to medicate me for my depression, and eventually we found a doctor who cared enough about her autistic patients to look into the medical reasons behind why my son seemed to see and hear horrors that we could not fathom.

For the first time in my son's life, he was hooked up to an EEG, even though he'd been treated randomly with various epileptic drugs all of his life. With an unusual temporal lobe background pattern identified in the exact location where intense auditory and visual hallucinations can be triggered, we found a part of our son's autism that could be treated.

Most days now, David is a happy boy. He's on less medication than he's taken since he was five years old. For the first time since he was eight years old, the medical and the educational therapies he enjoys are working well together. While David is still mostly nonverbal, and struggles greatly with auditory pain, we are finally beginning to catch very real glimpses of his intellect, his passion for knowledge, and his sweet personality.

My son's absence of a voice does not pain me so much as my inability to completely discover the captivating individual who is my son. But we have time. We are finally learning that David does comprehend, and always has, understood much of what is said around him.

Thank God, I always had enough respect for my son to never speak of the strains his autism placed on me within his earshot.

Somedays, as I watch my son joyfully discovering his world, I stop to murmer a prayer of thanks. Had I taken to heart an uncaring doctor's decision that my son's condition was "intractable and untreatable", I could well have become desperate enough to end both of our lives.