Articles and information about autism and related issues.

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Happy 14th birthday to my sweet and smart son, Jacob! He has overcome many challenges in his short number of years, but he has always been happy and kind to everyone, confronting his issues with grace, determination, and humor. A natural musician he plays piano and saxophone, making the world more melodic and meaningful in the process. It’s challenging for us both with my living so far away, but he is always close by in my heart (along with my younger son, Max). I am so inspired by the person Jacob is and the man he is becoming!

Yesterday was April Fool’s Day, but Autism is no laughing matter.

What is Autism? According to the National Institutes of Health, “Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.”

Autism often locks individuals in a world of their own, but on Monday, April 2, 2012, the planet will join together to “light it up blue” today for the fifth World Autism Awareness Day (WAAD). The inaugural WAAD was observed on Wednesday, April 2, 2008.

One of only three official health related United Nations Days, WAAD  “activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.”

The incidence of autism diagnosis has exploded in recent years: in 2000 1 in 150 children were diagnosed, whereas the most recent figures indicate that 1 in 88 children have received a diagnosis.

This is a 20% increase from the previously reported 1 in 110 children who received a diagnosis! More troublesome, according to noteworthy additional facts, Autism affects boys more commonly than girls — the incidence of diagnosis is now 1 in 54 boys! Previously, that number was 1 in 70.

As I have previously noted, I am personally touched by this increase in autism diagnosis:  my eight year son, Jacob, received his autism diagnosis just before his third birthday.

Since then he has made remarkable progress, most notably due to early intervention services such as Applied Behavior Analysis services provided by the Center for Autism and Related Disorders (CARD). Due in large part to CARD, Jacob’s inner light now shines brightly.

He has emerged into the thoughtful and intelligent little boy he always was.

He loves to tell bad jokes, do math, learn about the life, and he even recently tried out a batting cage!

He can now overcome his obstacles with eagerness and enthusiasm.

All this — and much more — from a sweet little boy who initially only spoke in 3 to 6 word sentences, lined up items, heavily stimmed and exhibited many obsessive compulsive behaviors.

Grateful is a word that barely communicates how I feel.

Despite the many challenges he has faced, Jacob continues to inspire and impress me. I am so proud of the progress he has made, and will continue to make. It is my hope that Jacob can always exist in his ebullient essence. By all accounts, Jacob is blooming!

I remain committed to Jacob’s enduring progress and will forever be his most ardent ally. I continue to make the most of my moments with him and my younger son, Max, and celebrate his achievements every day.

And so, even if you aren’t personally affected by Autism — although the chances of that are continue to decrease while the number of diagnoses increase — I encourage you to make an effort today to learn more about autism and understand the unique individuals who share that diagnosis.

Sometimes dates make a difference.

August 2, 2006 is one of them: it was on this date that my older son, Jacob, received his official Autism diagnosis from Robert J. Rome, PhD of the North Los Angeles County Regional Center. At the time, Jacob was slightly more than a month away from his third birthday.

Receiving the diagnosis was an emotional experience, though it was not entirely a surprise. Actually, in many respects it was a relief because having the diagnosis allowed Jacob to receive an array of helpful services for which he did not previously qualify.

Jacob and MeAt the time of his diagnosis Jacob had very limited speech (3 to 6 word sentences were the extent of his verbal communication). He also lined up items, heavily stimmed and exhibited many obsessive compulsive behaviors. In addition he had many fears and also lacked basic social skills. Despite these challenges, he emanated a beautiful and loving spark that just needed some help to shine more brightly.

Since then Jacob has made remarkable progress, most notably due to early intervention services such as Applied Behavior Analysis services provided by the Center for Autism and Related Disorders (CARD).  Founded in 1990 by Dr. Doreen Granpeesheh CARD is a leading provider of autism services.

Due in large part to CARD, Jacob’s inner light now shines brightly. He has truly emerged into the wonderful, thoughtful and intelligent little boy he always was. Grateful is a word that barely communicates how I feel.

He is fascinated with numbers and can calculate large sums. His favorite number is “infinity!” Not surprisingly he also loves Buzz Lightyear (“to infinity and beyond!”). For a while he could even tell you the day of the week on which your next birthday would fall! Actually, I suspect he still can, but his therapists have discouraged the behavior.

Jacob and MeHe also loves to tell bad jokes — specifically those in the classic “knock, knock” variety. He is also a wonderful artist who loves to draw and paint. Although I am his Dad, I can honestly say he has an impressive talent.

It makes me smile that he can now not only communicate verbally but artistically as well. Occasionally he enjoys playing music with his brother, Max.

He is also an “old soul” and has engaged me several times about topics seven-year old boys don’t often ponder.  Once he asked me “Dad, do you have to be dead to be in heaven?” I replied, “I suppose you do.” His response: “But God is in heaven and he isn’t dead!” Nietzsche retorts about God possibly being dead aside, I was stunned that this little boy was thinking about such big concepts. More recently he asked me what is on top of heaven!

Impressively, Jacob’s success story is more common than it is rare, as evidenced by the inspiring 20th anniversary video from CARD, below:

Looking to the future,  one of my goals is to eventually create an organization called the “Ourtism Association.” The mission of the organization — named to recognize how autism affects everyone in a family and that it is “our” responsibility as a society to help — is to provide supplemental income to families and adult individuals with a diagnosis.

Right now it is only a dream, but I am working to make it a reality someday. My “big harry audacious goal” (nod to Jim Collins) is to raise enough money to provide $50,000 to 50 families each year.

I suppose that isn’t outrageously audacious (it is “only” $2.5 million!), and 50 families is the tip of the iceberg, but my own experiences have inspired me to make a difference. This would be my contribution to that noble mission.

Jacob and MeOn a personal level, I will continue to encourage Jacob as the unique individual he is.

I enjoy experiencing educational activities with Jacob, but also recognize his need to be silly. Despite his uncommon maturity, the last thing I want to do is rush him into adulthood.

It is my hope that Jacob can always exist in his ebullient essence.

I remain committed to Jacob’s enduring progress and will forever be his most ardent ally. I continue to make the most of my moments with him and my younger son, Max, and celebrate his achievements every day.

Speaking of Max, the other night when I called to say goodnight to him, Jacob told me a “knock, knock” joke:

“Knock, knock!”

“Whose there?”

“Max.”

“Max who?”

“Max no difference!”

I’ve previously mentioned the struggles my family experienced getting the Saugus Union School District to provide services we feel are in the best interest of our older son, Jacob (who received a diagnosis of autism in 2006).

I now have some great news to report: we “won!”

It was by no means easy, or inexpensive, but it was definitely priceless! Here’s the story in its entirety (I apologize for its length, but I hope my family’s experience might inspire and inform other families in a similar situation):

For two years after his third birthday Jacob was enrolled in Special Day Class (SDC) preschool programs to facilitate his development. He had two wonderful teachers — Maritza dela Cruz and Brianna Jones — and Katie Perry, an amazing teacher’s aide.

We were grateful for the services we received and credit those experiences, in conjunction with Applied Behavior Analysis (ABA) services Jacob received from the Center for Autism and Related Disorders (CARD) with a huge improvement in his speech and social awareness.

In May 2008 we began looking ahead to Jacob’s fifth birthday (September 10). That’s when things started to get “interesting.”

We had our first Individualized Education Program (IEP) meeting in early May (three more would follow). Much to our dismay the District’s “offer” was an SDC Kindergarten program with some “mainstreaming” (“some” meaning 15 minutes a day — if that).

At first glance this might not seem like a problem. For some parents this is an ideal placement. And, for some kids, it assuredly is. I would never claim our situation is “the” model for everyone nor would I judge another parents choice if it different from ours. Every child on the spectrum is unique. For Jacob, a SDC Kindergarten was simply not the right fit.

Through a combination of “parental instinct” and our interpretation of the Individuals with Disabilities Education Act (IDEA), we felt the best “free appropriate public education” for Jacob was to hold him back one year in a typical pre-school setting with a properly trained aide to facilitate his social development (his main challenge now that his language has improved). We want him to be around peers whose behavior he can emulate and from whom he can learn.

We argued that, despite Jacob being chronologically five, since he was not developmentally a five year old, our request made sense. The District disagreed and stuck to their guns about the “chronological age” issue (at one point they even turned it around on us and used or terminology to support their point of view!).

So, we agreed to disagree, but spent most of the summer negotiating with the District to find a place for him in the quasi independent “Fun for Fours” program.

I even paid a visit the director of special educaton at the District to fully understand our options and to emphasize our desire for Jacob. We spent hours on the phone with District representatives. They listened, but took no action to indicate agreement. It sometimes felt like we were talking with ourselves.

As for the “Fun for Fours” program, we finally identified a campus at which he could enroll and he began in August. Notably, because the district considered him “school age” (and therefore qualified for kindergarten) we had to pay for his program at a cost of $116 per week. Not a huge sum, but in our situation it was a financial challenge.

Over the summer, we signed Jacob up for a summer camp program with typical kids at Creative Years, a wonderful independent pre-school in Santa Clarita. Each day he attended he was accompanied by one of his impressively trained therapists from CARD to ensure he was engaging properly and productively with his peers.

Jacob had a wonderful time and, by the end of the summer, had begun to initiate interaction with his classmates. (This fact was a cornerstone to the argument Heather and I continued to make to the District).

In August we also began treating Jacob in accordance with the Neuro Immune Dysfunction Syndromes (NIDS) protocol advocated by Michael J. Goldberg, M.D., F.A.A.P. NIDS are a classification for illnesses or disorders related to problems with the complex interactions between the central nervous system and the immune system.

The basis of NIDS is that many of the current diagnoses of autism are not actually autism, but are viral and fungal infections treatable with what might appear to be a strange array of medications for a five year old to take.

The main financial challenge with Dr. Goldberg is that he does not accept Blue Cross insurance — although he seems to accept almost every other insurance — so we are forced to pay for office visits out of pocket (a 20 minute appointment clocks in at $185). To date we have spent nearly $2,000 on appointments, blood tests and medication.

It is yet another treatment we can’t afford, but one we also can’t afford to forego. This seems to be a theme with special needs parents and we are no exception. You do what you have to do for your kids.

Fortunately, through a friend and fellow special needs parent we learned that, due to his diagnosis of autism, Jacob qualifies for Medi-Cal. So we jumped through the hoops and got him signed up. It has already helped mitigate the medication and testing costs associated with Jacob’s care.

However, we are still responsible for the office visits. But, what keeps us positive about this additional cost is that we have seen noticeable improvement in Jacob’s social awareness and interaction since beginning this regimen. Something must be working!

Note that, despite Jacob’s automatic qualification for Medi-Cal, our Regional Center representative never once mentioned it to us — we learned about this from another parent. Are you noticing a trend?

Unfortunately I cannot say the same for the DAN! protocol, which we experimented with for approximately six months starting in the fall of 2007. We spent hundreds of dollars on visits, vitamins and alternative treatments with little scientific measure.  Again, however, this was just our experience: I know some parents swear by DAN!

At the same time we began exploring our options with Bonnie Z. Yates, a special education lawyer who has a successful track record with the Saugus Union School District. She was unquestionably qualified, but she was also unfeasibly expensive: her hourly rate is $350 and the initial retainer was $5,000 — renewable in additional $5,000 increments. Ouch!

There was no way we could afford that price tag even though the proper placement for Jacob is priceless. Once again turning to our network of parents with children on the autism spectrum we were referred to Melonie Matjeka, a special education advocate. This was the turning point for us.

We officially engaged Melonie’s services on Jacob’s 5th birthday, basically signing over our $1,200 “stimulus check” to get the wheels moving. Given our situation it was tough to part with this additional income but immediately I sensed we were “professional grade.” To paraphrase a term made popular in the 2008 presidential election: Melonie is a pit bull with lipstick!

Without venturing too deeply into details I never quite understood and, to be honest, exhausted me when I lived through them, Melonie was able to zero in on every single error the District made while also maintaining a total mastery of every nuance of our IEP.

The District continued to stall and evade us, but this time they couldn’t get away with it. I was grateful for Melonie, but felt frustrated for the many families that do not use an advocate and get taken advantage of by school districts.

Although I can be cynical, it amazes me how easily and effectively a large organization (public or private) can take advantage of individuals.

Melonie was amazing. I still have no clue what half of what was printed in Jacob’s IEP really means, but I trusted her knowledge and judgment. Melonie’s measured, but meaningful interaction with the District kept the pressure on them, but in a diplomatic and productive way.

She was also very reasonable considering what we received for the “investment” in her services.  Including her final invoice, her services cost just over $2,000 — but honestly, she was invaluable. None of this could have happened without her intervention.

In late September we had another IEP, but were dismayed to realize that Jacob had not been properly assessed: we had no data with which to gauge his present status and no way to compare that against goals because they had not been properly defined.

After wasting our time and money, we set a date in November for another IEP. By this time an array of assessments were to be completed by District representatives to give us a better understanding of Jacob’s ability and potential.

Two months later, when the next IEP rolled around, we were again dumbfounded to discover that many of the assessments were hastily completed (one had literally just been finished minutes before our meeting!).

The reports were incomplete and/or inaccurate and did not include the full breadth of information required of such a document (e.g. parent involvement).

Given the lack of reliable data, and the District’s continued insistence that SDC Kindergarten was the right placement for Jacob, we set a date for yet another IEP in late January 2009 (eight months after our initial meeting).

By this point our heads were spinning: how many meetings would it take for the District to A.) get their act together and B.) finally see things our way? To facilitate the likelihood of the second happening, we took two important steps.

First, we had Jacob assessed by UCLA Developmental Pediatrician Dr. Kek-Khee Loo — Dr. Loo’s independent report supported our previously uncorroborated theory about the best placement for Jacob.

Second, we  asked Dr. Goldberg to outline his thoughts about the best placement scenario for Jacob in a formal letter. As was the case with Dr. Loo, the letter validated our initial assumptions.

Good to know our “parental intuition” was right all along!

So now, armed with evidence, on January 23, 2009, we headed back to what we hoped would be our final IEP, unsure what to think  but much more confident than we had ever previously been. We were cautiously optimistic.

Having prepared ourselves for another fight — or at least more disappointment — we were shocked when a District representative spent a good portion of the IEP reading from Dr. Loo’s report. Things were suddenly looking up.

The tide continued to turn in our direction and, by the end of the IEP, the District pronounced their agreement with the position to which we had steadfastly held onto since May 2008!

Notably, having recognized his current placement was indeed the most appropriate, the District is now covering the cost of the remaining week’s of Jacob’s preschool. This was a great financial relief as, up to that point, we had spent nearly $3,000 for Jacob’s tuition (we will save approximately $2,000 now).

We were both in shock and, to be honest, I wasn’t quite sure when to clap (so to speak) as I was not accustomed to this experience at any of our prior IEPs.  Fortunately, the other shoe has yet to drop.

We did compromise with the District on a few details, one of which was that we agreed to let a CARD therapist train a one-on-one aidethe District will provide (as opposed to the CARD aide becoming Jacob’s one-on-one aide). CARD will also provide oversight services and ongoing training as needed.

The District contracted with CARD to provide one month’s worth of training services which began on February 2, 2009 and we are now in the midst of that initiative.

This was possible, in part, because another student with this arrangement recently transferred into the District, so it set a precedent. Of course, were it not for an active and helpful network of advocate parents in conjunction with Melonie’s impressive acumen, we might have never known about this development.

Additionally, there was a “changing of the guard” within the special education ranks of the District, so that might have facilitated the change of heart. (Special thanks to Joyce Johnston, Director of Special Education and Erica Henson, Program Coordinator).

Lastly,  the current budget mess in California might have inadvertently helped our cause. Typically the District fights parents, making sure to beat us into submission through “due process” and other Draconian measures.

However, as was reported to us by another parent (the same one who recommended Melonie), at a recent meeting concerning budget cuts, the District made it clear that, to save money, they were no longer willing to as aggressively fight parents over special education issues. The new approach is to settle and mitigate overall expenses as much as possible.

So, due to some combination of all of the aforementioned issues, we have now gotten what we wanted. Things got moving remarkably quickly too. Since February 2, one of two expertly trained CARD therapists — John and Peter — have attended pre-school with Jacob.

Their responsibility is to facilitate his interaction with his classmates while improving how the aides interact with Jacob. They are also tasked with training the District’s chosen aide. John and Peter have a big responsibility, but I trust them completely.

Incidentally, the District aide’s daughter was a student of Heather’s when she taught kindergarten in the District several years ago. Additionally, Jacob’s teacher is the mother of the aide he had while in his second year of the SDC preschool program. Everything is interconnected it seems.

This is a learning and re-learning experience for everyone involved. So far the arrangement has been positive and productive for Jacob — though it has made the teaching staff at his school self-conscious and uncomfortable (CARD is very intense and demanding).

Personally, I think that, while well intentioned, the teaching staff is not accustomed to having so much expected of them (which is exactly why we wanted CARD involved in the first place). We will assess progress at the end of the month and determine our best next steps.

But so far, so good.

Considering the rocky road we took to get here, it is amazing how smooththe journey has now become. Of course, I can never fully relax, especially with addtional IEPs on the horizon.

Also, desite my gratitude for the District’s recent decision, I can never forget what they put us through for eight long months. Their antics cost us money we do not have — $5,000 to $7,000 — plus months of heartache and stress.

Still, while this doesn’t absolve all our challenges, it is a huge victory. I also remain grateful to the many individuals who helped us get to this point.  In looking back at this entire experience three words come to mind: persistence, patience and parents.

Only by working with and for each other can we give our kids the tools and resources they need to live their best lives. Whatever your  beliefs are about the causes and best treatments for autism, we must join together to support those who most need our help.

Love your kids and be loving to each other.

Adonya WongAs a parent to a child with autism, Adonya Wong understands the unique challenges and rewards that responsibility entails.

As an author, Adonya hopes to share that experience with others affected by autism and those wanting to learn more about it.

Her first book, In My Mind: The World Through The Eyes of Autism, creatively explores the inner world of an autistic child  through the form of a children’s picture book.

From exciting adventures to silly games and conversations with imaginary friends, the main character of the story — inspired by Adonya’s son, Nicholas — brings readers into his world.

In doing so, he demonstrates how one child with autism sees the world, and, in turn, how the world often sees a child with autism.

Adonya’s motivation for writing her book stemmed from the realization that there was a scarcity of literature directed to and written for autistic children and their families.

In My Mind was written to help raise awareness about autism, and she hopes that the reader will gain a deeper sense of compassion and tolerance for those “different” than themselves.

To help promote her book, Adonya has  launched a “Globe Trottin’ for Autism” virtual book tour starting on January 19 and concluding on January 29, 2009. During the tour, 11 different blogs will promote In My Mind and feature her answers to questions about life with autism, writing, the publishing process, and discussing future projects. Along with insightful interviews, you can read reviews of In My Mind and listen to an audio interview by Autism Hangout.

I came to know Adonya during the December 16, 2008 Autism Twitter Day. As a result, I was invited to participate in this unique marketing initiative. This blog entry represents day 2 of the 11 scheduled stops. As part of my participation in this unique event, I had an opportunity to ask Adonya some questions. I asked her about issues relevant to the themes of this blog: social media, education and autism (an issue of great personal significance to me).

Below are my questions and her answers — please feel free to post any questions you might have for Adonya in the comments section of this blog:

1. Tell me more about your son, Nicholas: what does he like to do, what are his strengths, what are his dreams? In what ways is Nicholas an inspiration and teacher to you?

Nicholas is an avid reader and quite the talented artist.  We go through about 6 Doodle Pros a year, so, hopefully, Fisher Price will see this post and send me vouchers once a month or quarter.  He also enjoys the computer to the point where, some nights, he gets a little teary eyed when told to shut it down.

Early last year, I stumbled upon a nifty little application, Zac Browser, and it has really opened up the Internet for him in ways I couldn’t have imagined.  The creator, Jon LeSieur, has a grandson on the spectrum, and he developed this application to simplify his web experience, thereby, making it more enjoyable for him.  I’m grateful he decided to share it with the world.  I highly recommend it!

I wish I knew what Nicholas’s dreams were.  He doesn’t always speak conversationally and his cognition of such a complex question is a bit low.  Whatever his dreams may be, I’m sure they’re grand.

I credit Nicholas for being my grounding source.  I feel that his presence in my life has made me more patient, tolerant and empathetic of others.  With every new day, I learn to just “be” and go with the flow.

He often tells me, “It’s okay, Mom” as he wraps his arms around me, and it is in these moments that I truly know that everything is going to be okay.

2. In what ways do you think you book can be used to educate and inform people not affected or touched by autism about what it is like to live with a diagnosis?

I initially didn’t write the book to educate folks since being a writer wasn’t even anything I was contemplating at that time in my life.  I didn’t even realize I had a story in me until I finished typing out the words to In My Mind.  The book, literally, came to me in a flash.  Some would say it was Divine Intervention!

As for me?  Couldn’t really say, but apparently, I am supposed to share my life’s experiences which is why I’m here today, talking about my first published work.

The book has been read by several people not “living” with autism and based on their responses, I can say that my book is shedding a different kind of light on the mind’s of those looking into our world.  In My Mind is a perception-based book.  People are often too quick to judge what they see without looking for the deeper/hidden meaning behind someone’s actions.

It is my wish that my book will get folks to stop the judgments and be more accepting of those perceived as being “different” than themselves.

3. What role did social media play in the production and/or promotion of your book: did you use any specific websites/services to develop ideas for your book and which websites/services are you using to market your book?

Social Media has played a huge part in promoting my book — it seems to be the current trend in getting people to notice you or your accomplishments.  Shortly after I received word that my book would be published, I put up a presence on MySpace and Facebook.

I have since added several Ning networks (most of them dealing with either writing/published authors and autism) to that list as well as Twitter (which is how I met you, my friend).

I also have a website that I put up shortly before the book’s pre-release.

4. For the aspiring published authors out there (myself included), describe the process by which you found and were signed by your publisher. Also explain what the writing and production process was like — in what ways was the Internet part of that process?

Finding a publisher was easy.  Although, I didn’t choose the self-publishing route, I did get signed on by a Print-On-Demand publisher.  Getting published the traditional way meaning going with a well-established and widely recognized (by way of their name) publisher requires money (finding a literary agent) and, oftentimes, years of walking the grounds.

My publisher has lowered the percentage of manuscripts they choose for publication from 4 to 3.5%.  My experience with them, so far, has been positive.

My suggestion to an aspiring author is to get your story on paper.  Then join groups like Critique Circle and get others to mull over your work.  Now, this is not something for the faint at heart.  If you’re someone who doesn’t like criticism in any form, I suggest you choose another path.

Anyhoo, some of the members of Critique Circle are editors, and I’ve read of a few people getting signed because of their relationship with these folks via this platform.

I didn’t use the internet to help me with my book as I am living with someone on the spectrum.  I had my everday experiences to fuel my writing.  Children’s fiction is my genre of choice, and I don’t anticipate having to do any “outside” research for any of my work.

I recently purchased a book by successful self-published author John Kremer titled 1001 Ways to Market Your Books.  I am also a member of his Ning network, Book Marketing.

5. Will the book have any kind of online companion presence, perhaps a resource site for parents and other interested individuals?

My website is a work in progress.  However, I do offer links to sites that have been helpful to me over the years.  I will be updating it soon with writing/publishing information.  But I anticipate that happening after my site goes through a redesign. I will, however, be adding worksheets for children that I hope will stimulate their imagination and encourage them to follow their dreams.

Special thanks to Adonya for writing her beautiful book and including this blog in her Virtual Book Tour!  If you have questions of your own about In My Mind, please leave them in the comments section of this blog, below.

Also be sure to visit the next stop on the Virtual Book Tour, The Bon Bon Gazette, where Adonya will answer additional questions.  While you’re there be sure to place your daily entry for her giveaway.

To enter, simply comment about your relationship with autism, what you are doing to raise awareness, and how In My Mind has touched your life. Be sure to visit all of her stops to qualify for this amazing prize!

One lucky reader will win a gift basket containing an autographed copy of In My Mind, a copy of Ten Things Every Child with Autism Wish You Knew, packages of Enjoy Life™ and Namaste Foods™ goodies, an eco-friendly cleaning starter kit (Whole Foods® 365™ brand), and (1) $50 Amazon.com gift card!!  This prize is valued at $200!!!

To learn more about In My Mind and what it’s like to live with autism, visit Adonya’s website or her blogIn My Mind is available online at Amazon.com, Books-A-Million.com, Borders.comTarget.comTate Publishing and coming soon to a bookstore near you! Note that a portion of the author’s proceeds benefit Tulsa Autism Foundation.

You might also want to visit the other stops on the Virtual Book Tour:

So, what’s in your mind about autism now?

My oldest son, Jacob, turns five years old today, September 10.  I remember looking at him while he warmed up in the incubator just minutes after he was born and, while holding his tightly curled fingers, said to him “Happy birthday, Jacob!”

4-color-puzzle-piece-special-needsI knew things would never be quite the same — now I was responsible for some else’s life and welfare, not just my own.  I was excited, scared and emotionally overwhelmed at the presence of this little spirit in my midst.

Little did we know then what we would be dealing with now. That being said, he is as much a joy now as he was then, despite the unexpected challenges we will overcome — they key word being “will.” To paraphrase a famous saying, “failure is not an option.”

In addition to the medical and developmental challenges, another challenge we will overcome is the inability, or at least the reluctance, of our school district (Saugus Union) to provide the most beneficial “free and appropriate” special education services to which he is entitled a person protected by the Individuals with Disabilities Education Act (IDEA).

Initially we had to fight with the district because they wanted to place him in a special day program kindergarten program with the vague promise of “mainstreaming” him for short periods in the day. “Unacceptable,” we said, “Jacob needs to be in a typical setting with the help of an aide and he definitely is not ready for kindergarten.”

Eventually, after significant wrangling, the district agreed to place Jacob in the quasi-independent “Fun for Fours” pre-school program with the intent of focusing on his social development.  However, we had to compromise on the aid, and instead of him receiving direct assistance from a dedicated aide, he will split one aide with three other students.

Although the environment is a positive one, we are very concerned that he is not getting the personal guidance and attention that he needs to develop. Over the summer he benefited immensely from a one-on-one aide, one of his ABA therapists from CARD (Center for Autism and Related Disorders), who joined him for six weeks of a summer school program. Near the end of the six weeks Jacob was starting to initiate interaction with his peers — something he has never done before.

We now find ourselves at an important crossroads. We feel this is a “make or break” year for Jacob’s social development and are committed to getting him the resources he needs and the opportunities to which he is entitled. After numerous attempts on our own behalf to get the district to give Jacob a one-on-one aide we have realized, regardless of whether they are sincere or not, it won’t happen without a fight.

After initially considering a special education lawyer who, though vastly successful, bills in $5,000 retainer installments, we were referred to an absolutely impressive special education advocate, Melonie T. Matjeka of a group called “Empowered Parents.” Fortunately for us, she is significantly more affordable, but no less effective — we almost literally signed over our entire economic stimulus check to her.

Thanks for helping us help our son, Internal Revenue Service!

Two years ago, on August 2, 2006, my world was forever changed.

Autism AwarenessIt was on that day when my older son, Jacob, was officially diagnosed with autism. By the time we received the official diagnosis it was clear that he was on the spectrum, but the official diagnosis really made everything “real.”

Prior to that point we had enrolled Jacob in occupational and speech therapy classes (at our own expense) to help him learn to more effectively communicate.

He had minimal language, but was more prone to pointing to things he wanted. More commonly, he would take our hands and guide us to what he wanted.

Jacob’s diagnosis allowed us to receive a vast array of services — free of charge — through our Regional Center, a quasi-governmental agency that connects children with special needs with qualified providers. The main service we receive for Jacob is a one-on-one therapy called Applied Behavior Analysis (ABA). Jacob qualifies for 40 hours a week of services — which now are divided between his time in school and the ABA he receives at home.

After approximately a year with one vendor who we found to be highly disorganized and unprofessional, we were fortunate to change agencies. Jacob now receives his ABA therapy from the Center for Autism and Related Disorders (CARD) — a worldwide leader in the field founded by Dr. Doreen Granpeesheh. We have also explored alternative biomedical treatments and experimented with a gluten and casein-free diet.

Without question the past two years have been beyond hard — I could have never imagined our family would have been confronted with so many life changing and life threatening situations. In early 2006, as it was becoming increasingly clear that Jacob was dealing with something more significant than speech delay, his younger brother, Max, was born six weeks premature with a host of life-threatening challenges of his own.

For Max, basic survival was the main issue — he nearly died three times in as many months and I even gave him CPR — on my birthday of all days — after he stopped breathing, turned grey and went limp. We spent weeks in hospitals with him, NICUs, PICUs, Children’s Hospital, you name it. All the while we knew that Jacob needed more help than we were able to give him.

The experience drained us emotionally, financially and physically. Having one special needs child is one thing, having two really tests you. We sometimes refer to Jacob and Max as our “million dollar babies,” because the direct and indirect medical care they have both received in the past two years has easily totaled $1 million or more. Fortunately we had insurance, but unfortunately, our insurer was adept at finding all sorts of clever reasons why they were not liable for paying for various treatments.

However, despite the multitude of challenges we have faced in the past two years both Max and Jacob have made tremendous improvements. By most accounts they have both beaten the odds and continue to surpass expectations.

Although he still has a ways to go, Jacob is now very talkative and interactive. He is full of joy and has an impressive ability to play with words and exhibit creative thinking. Max is a gregarious fireball who has a lust for life that is inspirational — he is the kind of person who other people want to be near. I admire them both tremendously and know that they are my strength.

I now feel that I have my sons back and am finally able to experience something close to “normal,” whatever that really is! I can now imagine what it will be like in another two years and am excited and hopeful about the potential both boys have.

Last Wednesday, April 2, 2008 marked the first annual “World Autism Awareness Day.” The day was created by the General Assembly of the United Nations which voted in November 2007 to establish the annual event date as an opportunity for Member States to raise awareness about children with autism.  Various events and lectures were planned around the globe and CNN scheduled all-day coverage about autism. April is also National Autism Awareness Month.

Autism Awareness RibbonWhat is autism? According to the Autism Society of America, “Autism is a brain development disorder that impairs social interaction and communication, and causes restricted and repetitive behavior, all starting before a child is three years old. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.”

Autism is one of five disorders considered a Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development.”

These disorders include: Autistic Disorder, Asperger’s Disorder, Childhood Disintegrative Disorder (CDD), Rett’s Disorder, PDD-Not Otherwise Specified (PDD-NOS). Each disorder has specific diagnostic criteria which been outlined in the American Psychiatric Association’s Diagnostic & Statistical Manual of Mental Disorders (DSM-IV-TR).

Diagnosed in an estimated 1 in 150 children, autism is the most common Pervasive Developmental Disorder, and the numbers are on the rise. It is estimated that as many as 1.5 million Americans have some form of autism.

Data from the U.S. Department of Education and other governmental agencies indicates that autism is growing at an alarming rate of 10-17 percent per year — and the Autism Society of America estimates that 4 million Americans could be diagnosed in the next decade.

Below are some additional facts about autism, courtesy of Autism Speaks, an advocacy group:

Basic Facts

  • 1 in 150 children is diagnosed with autism
  • 1 in 94 boys is on the autism spectrum
  • 67 children are diagnosed per day
  • A new case is diagnosed almost every 20 minutes
  • More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
  • Autism is the fastest-growing serious developmental disability in the U.S.
  • Autism costs the nation over $90 billion per year, a figure expected to double in the next decade
  • Autism receives less than 5% of the research funding of many less prevalent childhood diseases
  • Boys are four times more likely than girls to have autism
  • There is no medical detection or cure for autism

Incidence vs. Private Funding

  • Leukemia: Affects 1 in 25,000 / Funding: $310 million
  • Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 million
  • Pediatric AIDS: Affects 1 in 8,000 / Funding: $394 million
  • Juvenile Diabetes: Affects 1 in 500 / Funding: $130 million
  • Autism: Affects 1 in 150 / Funding: $15 million

National Institutes of Health Funds Allocation

  • Total 2005 NIH budget: $29 billion
  • $100 million goes towards autism research
  • This represents 0.3% of total NIH funding

Autism has clearly become the polio of our time and something must be done to reverse its progress. If we don’t act now and dedicate more research dollars to finding a cure and treatment, while also finding a way to convince the health insurance industry to cover the costs associated with treatment we run the risk of losing an expontentially increasing percentage of this generation’s children to autism.

The impact of autism on families is extensive. Emotionally, it can be draining. Mentally it can be consuming. Physically it can be exhausting. Financially, it can be devastating. In addition to the divorce rates of parents with autistic children being higher than the average, many families of children with autism struggle to avert bankruptcy.

It’s no wonder, the costs involved are daunting: from the early intervention and treatment services (which only a handful of states cover) to the lost income from one parent in a two-parent household who must stay home with the affected child while services are provided, autism affects an entire family, not just the individual overcoming it.

Raising a child is stressful enough — raising a child with autism is beyond compare. That is not to say that raising a child with autism is totally unlike raising a “neurotypical” child, it just puts things within a different framework.

I speak from personal experience: my older son, Jacob, who will turn five this September, was diagnosed with autism just before his third birthday.  We have come a long way since then, but still have far to go. He is now speaking contextually, exhibiting emotion and is full of boundless energy. Some days are full of joy while others are full of challenges parents of children without autism truly cannot comprehend.

Fortunately Jacob is on the higher functioning end of the spectrum and has many skills that a typical child near his age has (though developmentally he is not functioning at a level consistent with his chronological age). He is a sweet and smart little boy with a curiosity about the world and great potential to do wonderful things with his life.

We are grateful for the services he has received and credit them with a great deal of his progress so far. However, we have also had to aggressively advocate on his behalf to ensure he continues to receive the services to which he is entitled.

Jacob currently receives his applied behavior analysis (ABA) services through the Center for Autism and Related Disorders (CARD) — a worldwide leader in the field founded by Dr. Doreen Granpeesheh. His Individualized Education Program (IEP) is coming up in a month and my wife and I are beginning to prepare for battle with the Saugus Union School District to ensure that he receives the most appropriate and beneficial services.

As a father, Jacob has taught me many lessons about life. but I know I have much more to learn. I now appreciate the small steps in life and applaud incremental improvement, however small, because it represents movement in the right direction. I admire his sweet and loving disposition and marvel at his unbridled joy and creativity. He is a wonderful little boy who has inspired me to become a better father and, frankly, a better person.

For additional information about autism, I encourage you to visit the following: