To The Parents Of Other Jacks

[revised 4/22/09]

Welcome to my most read post.

Lots has changed in the two years since this post was first written.

Jack is eight and in regular public school second grade. No private aid who helps only him, but some redirection help from the classroom aid, and he still has some speech therapy, specifically catered to him a couple hours a week. This has been very important for him, because speech therapies given to autistic children do not work for late talking children. THIS IS THE BIGGEST REASON WHY IT IS IMPORTANT TO DISTINGUISH BETWEEN AUTISM AND LATE TALKING! THERAPIES ARE NOT INTERCHANGEABLE. THEY'RE OFTEN DETRIMENTAL TO THE PROGRESS OF A LATE TALKER.

Thankfully, Jack's new school understands this and has made adjustments--without ever once discussing funding with us! I don't know that they've ever had a diagnosed late talker before, but they were excellent at getting themselves up to speed, communicating with Dr. Camarata for insight. The guidance counselor and his teachers, the head of speech, the OT therapist...all of them welcomed me like a messenger from Greece. It is one of the top public schools in this state, and I'd have to say a big contributor to their success is their understanding that they have to stay open-minded and updated, and never take for granted that they have learned all there is to learn about children.

Jack's about to finish up second grade and is very much anticipating his summer. I can't say he loves schoolwork. It's harder work than I ever remember. In fact, his class has been doing third grade work since Christmas. It's remarkable that he can get the grades that he gets, meeting these higher expectations--he had a Geometry test on Monday!-- and he does so well, even with a speech processing delay to overcome.

But he comes home ready to relax, as I'm sure the day is even more draining for him than the other hardworking kids, as he's still deciphering what everyone is saying, the instructions, the social dynamics, dealing with the distractions of white noise which has the annoying effect of pulling him away from focusing...All of this on top of the expected learning.

He's still a little awkward/shy around other kids, depending on their personalities, because he knows he says things incorrectly and has often been embarrassed by other children making a big thing of it.

He still withdraws a bit in new situations, uncomfortable in conversation with people who don't know to slow down their questions, repeat a noun or two so that he gets a second chance at processing what was said, or who get uncomfortable waiting through his longer than typical pauses while he's calling up the answer. For people who know this about him, you cannot tell he ever had a communication problem. I think of it like a combination stuttering/dyslexia. The higher the stress of the situation, the more obvious it is how difficult processing verbal language is for Jack.
He's also very interested in things most adults aren't familiar with, like the complicated plots and challenges of his favorite Wii games. Someone might ask him something like, "Read any good books lately?" as a litmus test for the miraculous progress I've been going on about, and he'll say, "Do you know about the evil Ganondorf?"
They usually don't, and since he doesn't follow up with, "He's a character in a book I've been reading," but rather, explains that Ganondorf is a character in a video game, the dialogue shifts abruptly to a subtextual, 'Why can't this kid discuss anything that doesn't involve a Wii game???'
I know how irresponsible it sounds to admit my eight-year-old son loves video games, but I'd like to mention that computers taught my boy how to read by age three, and although he's not studying for his GREs on the Wii every night, he IS using the internet for self motivated research. For example, while mastering certain levels of Zelda or Mario, he'll come upon a snag, so he has learned to type in a question like, "How do I defeat level three Zelda?" on the computer. He will find the solution, read it, jot notes, run back to the computer and move on to the next level.

He has trouble telling stories, and often uses hand gestures to substitute. You can tell that he sees what he wants to say very clearly in his mind, but converting those images into words in proper order is still hard for him. I wish I could give him a break now and then, and hop inside his mind with him. Someday, he will figure it out. He amazes me in bits and pieces all the time, but when he manages a full manuscript, look out. I know it's in there. If he's anywhere near as gifted as his sister, who comes up with incredible stories all day long, when he first puts it all together, it will be amazing. I can wait.

He still forgets names. He's so bad at remembering names. I have no explanation as to why he can't remember names, but he's like my grandfather in this respect..."Hi...you! How are you?"

"What's that little girl's name who just said hi to you, Jack?"
"Aw, man. I don't know, but she's beautiful."
"She's been in your class all year. You don't know her name?"
(embarrassed) "I know." Then he scratches his hair, like the name is going to fall off like a flea.
"It's June! Her name is June McRuffustopolus, and she's seven and likes My Little Ponies, but doesn't eat peas!"
"Okay. Good. Thank you."
Do not be offended if he doesn't remember your name right away. It took him five minutes in the presence of President Lincoln to remember his name, and though Lincoln was very patient, Jack was sure annoyed with himself. Then he rattled every fact he'd ever absorbed about President Lincoln, and talked more than I'd ever seen him talk:



Names and facts are not stored in the same place for Jack. Names get filed in the cerebral basement.

He does do excellent school work in most subjects (has gotten excellent at handwriting in cursive, but has had some recent struggles in reading comprehension), gets consistent 'Outstanding' marks for behavior and respect towards others, and his teacher always speaks very highly of him.

We've known a long time that Jack is a bright kid. He does not like taking standardized tests, however. He manages normal ranges or slightly above, but nowhere near what he's capable of, because he does not like to move on to a new question if he isn't 100% sure he has answered the last one correctly. Both his first and second grade teachers have told us that they know Jack would score much better if he could get over this hang up of needing to be absolutely sure before moving on. He does not like to guess, so he slows himself way down, and he gets frustrated by the idea of being forced to guess. He assumes there is a right answer out there somewhere...if only he can have access to that information to find the answer just to make sure. Not the nature of standardized tests, and so he will never be accurately reflected by them, until the day he knows every single answer absolutely for certain and scores 100%.

Despite my concerns about the current administration's call for higher school standards, with specific emphasis on increased test scores, life has been a breeze since our negative Kindergarten experience. Things finally make sense again since moving to our current school district, where they accepted the late talking diagnosis and began working with the Camaratas to help Jack catch up in verbal processing.

It's not entirely perfect. The emotional journey of all this. Last month, two boys in Jack's Scouts asked Tom (in front of Jack and all the other boys) if Jack is autistic. That deflated all of us a bit. They weren't asking because they know what autism is. They were asking because their father made the assumption and said that Jack was, because he'd observed that Jack is different, and different always gets scrutinized, undervalued, labeled...
Maybe adults are well meaning when they jump to the conclusion that a speech struggling child is autistic. Maybe they even have a very positive definition of autism in mind, because of the autism spectrum. But the word autism, in our experience, has been translated by other children (and too many adults) to mean something that is vulnerable, inferior, and exploitable. These boys who believe Jack to be autistic now treat him like a baby. They insist that Jack gets upset about things because of autism, and not because of anything that THEY did. It cuts kids like mine off at the knees twice...
But I've reached the leathery point of believing that these five intensive years of adversity will shape a compassionate intelligent man.
We cannot take on the world any more. I'm tired. But we can help him learn to walk tall with his head high.

I know there's a network of compassionate individuals out there who seek to elevate the word 'autism' to a level of acceptance that is as positive a descriptor as 'green eyes' or 'left handed.' But thanks to the other faction that uses phrases like, 'Great plague of our generation' or '20% chance of normal to below normal intelligence,' or 'so tragic--so sad,' we had to seek out other opinions for our son, because there was NEVER a time when I could believe we should pity ourselves. He has always been brilliant. Not easy. Not perfect. Very much a boy, always. And incredible. His struggles were no great chores for us. We adapted before we even realized that's what we'd been doing for years. I was never ashamed of him. Never angry that he wasn't like all the other kids who seemed to have it all come so easy.
I was worried sick about other people treating him poorly. For a few years there, I had very little power over what others said about him within earshot, how they treated him, what methods they took upon themselves to use in efforts to show me he had no feelings or intelligence. My panic was always rooted in the reality that the world was too stupid to appreciate my son, and never the other way around.

You will never hear me call anyone's child a waste...like somebody said of MY child, when they thought he was autistic.
No one's child is a waste.
Autism is a phenomenon. In the same way we focused on the moon, we should focus on understanding autism--not dissecting it so we can figure out how to destroy it, but focus on understanding it so we can communicate back and forth one day--, because it will teach us tremendous things about our humanity, and more than likely provide a foot up to the next tier of human innovation.

But Jack is not autistic, and I will not let anyone say so, both for the sake of autistic children, and for the sake of Jack receiving his late talking specific speech help.
A label is annoying to begin with, but entirely useless if it is wrong.

There are people who still insist upon putting Jack on that spectrum. Their jobs and philosophies are at stake. Other professionals in fields of education or early childhood intervention have come around, curious of the information we've compiled, and optimistic along with us. Eager to improve their scope of information. The ones who stay fixed in the belief that they've got it all figured out, and have an explanation for any contradiction to their beliefs, are the ones I have no use for. I will not pity them their hard working days, or unappreciated efforts, because I know what they put my kid through...and my kid is far more important to me than their egos. Why should I give them the courtesies they would not give him?

Maybe someday we'll learn that Jack's late talking was caused by some toxin in his environment that was much more cost effective for our society, with collateral damage to be expected for the mass comfort of the rest of us. Or maybe it was from a trauma, like stitches in the ER & getting strapped to a board, or burning his hand on an exhaust pipe, or being put under for a two hour surgery for the removal of a cyst from his neck...
Maybe it was the microwaved plastic bottles with hormone raised cow's milk mixed with three month's dosage of Amoxicillin.
Maybe the computers turned him into a visual learner.

I could go on and on...

But it doesn't matter. We don't need to save him. He is still the perfect kid we always had, who we love dearly, and who has unlimited potential, so I would not change a thing.

He deserves to be accepted as much as anyone, especially after all he's put up with from other human beings. But we've gotten used to the ebb and flow of the situation as a family. Just when we think it's all behind us, the misinformed detachment or insensitivity of others, someone reminds us that it's all rigged. Then Jack overcomes it. This will always be our life.

I still worry about the effects of him getting picked on by other kids for stumbling on his words now and again, but for the most part, he reassures me he's not suffering for this, because he has us to come home to, and as he put it, "You understand me at home."
Which is more than a lot of kids get.

If you've gotten to this point, you've already been through a lot and you're looking for answers. There are other answers. You do not have to settle for a guess.

Good luck to you & know that you are not alone.

[Jack & Me, 2008 --a very happy kid]


The original post [03/12/07]:


March Break 2003 Jack Throwing Sand, originally uploaded by Life in the Pumpkin Shell.

While I was in Vegas last month, USA Today printed a story about the surge in autism and how scientists were desperately scratching their heads as to why this might be.

I didn't read the article.
I have a very negative reaction every time I see Autism in print connected with language suggesting it's the great plague of our generation.

A year ago, 90% of the people in our life believed Jack was Autistic.
Since that diagnosis was overturned, nobody does. Or nobody admits to it. His Kindergarten does, but his school doesn't know one end of the spectrum from another. They only know our kid is different and they don't have time to adjust any more.

Anyway.

I can't expect to help the world if I'm too cowardly to tell our story.
I have worried about blog stalkers dropping in to tell me I'm setting Autism research back, "It's parents like you who encourage prejudice," or something or other.
I've worried about a shockwave throughout my family. I have worried about my teacher friends, already overwhelmed by circumstances beyond their control (thanks, government).
Of course I realize we're a nation at war, and most people don't give a shit about anything except that. What's one child when so many die each day?

But.

There could be another Jack somewhere.
And I would not have gotten answers had it not been for a book written by Thomas Sowell.
Or a clinic in Nashville, Tennessee run by the Camaratas.

So I'm putting Jack's story out there, in case other parents are looking for answers. In case other people are suspicious about the recent surge of Autism.
Or maybe for those who are apprehensive about the negative associations with Autism, as I am. For those who believe all of our minds are valuable. For those who suspect there's so much more going on than we've taken the time to consider.

I began this thank you letter to Mr. Sowell, but I share it with you instead:

Dear Mr. Sowell,

We took our son Jack to see the Camaratas on Valentine's Day. We took with us the paperwork from Whitcomb Children's Hospital, which had diagnosed him a year earlier with Autism and Severe Expressive Language Disorder. When the head psychologist and speech pathologist from Whitcomb slipped that news to my husband and me, I lost control of my emotions and kept asking, "Can you at least tell us he's high functioning?" and they refused to do so.

We took Jack to them after a year of frustrating observations tossed at us by Jack's preschool. We were hoping for answers to his delayed speech and were told instead that he was low functioning Autistic, with a 20% chance of achieving normal to below normal intelligence. Jack had so many exceptional skills, the diagnosis made no sense to me, and the more I resisted, the more it seemed the specialists focused on me rather than answers for my son. Even the early childhood special needs educators in my own family put together an intervention based on their brief observations under stressful circumstances (family reunions), which as you can imagine, only fueled my distrust for the system.

I still have trouble speaking to those who insisted I come to terms with Jack's Autism. I tried using all of my resources to get them to open their eyes wider, and with each attempt, they stuck stubbornly to fixed opinions.

They would deny his reading, tell me it was a parlor trick, and discredit how well he was doing by refusing to allow him adequate time to sound out multi-syllabic words, or cite examples of Autistic persons with exception irrelevant skills. Lucky quirks which easily create false hope for parents grasping at any sign.

'But can he sit still and keep his mouth shut throughout an entire school day? Can he articulate how he's feeling? Describe what he did three weeks ago? What he wants to do in 2013? Let us not forget he is either mutated or damaged! He is tragic and sad. Despite your happy family, the real world does not accept him as normal or special in a positive way, and YOU, mother, are guilty of not accepting those terms. We have a system all set up to handle children like your son (not really) and you're making things much more difficult with your 'instincts' and questions, which means you're selfish and prideful.'

Low functioning Autistic child + Mother in denial. Case closed.

The worst thing ever said:

"When I see children like Jack, it makes me so sad. It's such a waste."

Do I believe that children who are diagnosed with Autism instantly receive the care and understanding they need within our society's system?
I do not.
Would I hand my child over to an educator who believes him to be mentally retarded and incapable of ever achieving a normal life? No.

"What is normal?" the psychologist asked me.

If there is no normal, why are there so many labels?
The only persons I consider mentally retarded are those who label it. Which I guess would also include me for saying that, but I can handle it so long as I have made my point.

My point? There is beauty in all of us. We can either tear others down to make ourselves feel taller, or we can lift others up as we go.

I'm tired of the tearing down.

A year after Jack's Whitcomb diagnosis, because I read your book, and because Mary Camarata was such an amazing resource on the phone for us, we took Jack to see her and Dr. Stephen Camarata, and I wanted to share with you the results:

He is in the superior range for all academics. He's in Kindergarten, but was placed at nearly third grade levels for reading--which he taught himself how to do by using his computer programs. He scored in very superior range on the I.Q. test.

*This is the first time Jack's intelligence was EVER tested.

Even more positive were their opinions of how nice Jack is, willing to participate, a joy to spend time with.

Mary suggested many areas in which Jack will eventually excel. "Watch out for that boy in high school and college. When he finds what he wants to do, there's no holding him back."

This is a total contradiction of the findings by the Whitcomb team, who described Jack as an incredibly anxious little boy. His refusal to participate was noted, rather, as an inability to participate. Unable to hold a pencil, for example. Did not know his shapes at age five, they informed us.

The Camaratas never removed Jack from our sight. Whitcomb removed Jack from us as often as possible.

The Camaratas are kid people first, scientists second. The Whitcomb team was all clinical. You just can't accurately evaluate a human being's potential while treating him like a test subject.

The final diagnosis by the Nashville clinic was 'Mixed Expressive/Receptive Language Disorder.' The Camaratas took him completely off of the Autism spectrum.

Turns out, despite the absolutely confident opinions of several specialists along the way, JACK IS NOT AUTISTIC.

Dr. Stephen Camarata was baffled while reading over the Hospital's evaluation. He called it the worst misdiagnosis he had ever seen and gave Tom several examples as to why their findings contradicted themselves. And at what point during their testing that they should have attempted different tests when it was obvious that verbal based testing was setting Jack up to fail.

Even Jack's pediatrician could not get over how different Jack was in person compared to the paperwork which Whitcomb Hospital provided him.

"I was expecting to meet a non-responsive, severely anxious child. Jack is clearly not low functioning. Send along the Camarata report when you get back."

I know you know the stress of all this, Mr. Sowell. To know your child and be told by specialists and professionals that it's selfish to hope and selfish to dream what all other parents get to dream, and what's best is to accept what they say, etc. etc.

We were warned to have Jack genetically tested if we were considering any more children! We were encouraged to get him a locating collar. I was told to join a support group, where people would help me come to terms with my denial. There were certainly times when I doubted my instincts and took on the fear that I was denying the obvious. Fortunately, my marriage is a strong one, and the two of us kept each other up long enough to get to the Late Talking Clinic.

Now we've learned from the Camaratas what we'd recently come to suspect. Jack has trouble processing verbal communication. Spoken words go by too quickly for him, and before he's figured out the string of instructions and verbal details, the speaker has moved forward and Jack finds himself in trouble with a teacher or aid for not listening, paying attention, doing what he was told to do, etc. Dr. Camarata warned us that the next opinion will be that Jack has ADD, which he has ruled out, because Jack will stay fixed on what he likes to do and does not have the compulsion to carry out other activities like an ADD person.

We still have constant notes from his school, eager to have Autism put on Jack's IEP so another aid can be hired. The difference in diagnosis won't mean much to them. Maybe they'll surprise me. [They did not end up surprising me. They finished out the year in a huff, treating Jack like shit, with no interest in communicating with the Camaratas. His new school is amazing on this note, however. We could not be more grateful.]

The Camaratas suggested we find a school which will challenge him in reading and other areas, while giving him the patience he needs to build up his receptive language skills.
I wish I knew where such a school existed. [We found it! Thank God, but it wasn't easy.]

We toured a Montessori school this winter and the director did everything she could to discourage us from placing our child with them just as soon as I mentioned Autism, even though I told her honestly what we'd been through and what I suspected were his real issues. She told me several times that he would find their structure difficult, and so we keep hoping for a great teacher in Jack's future. I believe Mary when she tells us that by second or third grade, he'll catch up in speech. That's two and a half more school years, unfortunately.

Our work is still ahead of us, helping his mind connect the wires which help him process more quickly. I do not know if his mind was predisposed to excel in other areas, and that's why his speech lagged, or if the alternate wiring caused his mind to focus on other areas, like reading at a very early age, as means to find some way to communicate with us. I just know that there are no real answers. A quick web search reveals that most specialists consider mixed expressive/receptive language disorder to be a proof positive symptom for Autism. It's theorized that either genetics caused the 'disorder' or brain injury or malnutrition. You never read something optimistic like, "An exciting condition where the mind absorbs knowledge at an accelerated rate. The side effect only temporary, a lag in speech. If a child with such a fortunate brain is given positive reinforcement, combined with creative speech therapy and constant stimulation in areas of interest, there is no telling what these children will eventually achieve. Every parent of such a child should take on the extra responsibility with great pride. Every teacher should be thrilled to have such an exciting child in her classroom. Adjustments need to be made, but the rewards are unlimited. Yee haw! Great great stuff."

If I'd read something like that three years ago, I'd certainly have had the confidence to tell naysayers they need to have hands on experience before spouting off predictions at alarming rates to desperate parents. Any curious mind can tell there's an incredible person behind Jack's language barrier. I may be his mother, but I'm also capable of observation and calling upon my instincts when the facts don't make sense. I sought out alternative possibilities after the Whitcomb diagnosis knocked the wind out of all of us, and your book was all I found to shake off the doubt and confusion. It got us back on our feet and lead us down to Nashville.

Our next step is a meeting with the school, during which time it'll become obvious that the principal pushing for the revised IEP and the teacher overwhelmed by 25 students in her class, and the speech therapist who is seeing 1/3 of Jack's Kindergarten center, will not know the difference between Autism and receptive language disorder, except that it keeps Jack from being upgraded to more federal aid. If they truly care about what they do for a living, they'll be receptive to the information we've sought out independently. They will be relieved to hear that's it's very possible the surge in Autism is really children with speech trouble whose intelligence is underestimated and behavior misunderstood.

At least I have faith that Jack's pediatrician has become curious.
I wonder why more specialists don't wonder more broadly.

I need to convert it all into more positive energy.
If there is any way I can help other parents, please let me know. Had it not been for your book, I'm not sure where we'd be today. I'd like to believe we'd never have given up, but it can be so exhausting, the constant negativity of therapists and teachers and anyone else who hears 'Autism' and immediately thinks, 'lost cause.' To resist Autism is to be prejudice. It's such a rock and a hard place unless one is hard headed.

We go forward from here with our son, and in a few years we deal with the next level of issues of a child who prefers to self-teach at his own pace.
We're grateful for our children.
I would not trade a single experience if it meant not having our wonderful children.
But I do hope to encourage any other parents who may be where we were a year ago.

Thank you many times over for being brave and honest. For providing a text which we could use as a family to push through. These are confusing times, when seemingly the loudest, not necessarily correct, set the standards. I'm grateful some still speak up.

In our case, it meant the world.

Thank you.