look again

Josiah has had a terrific week at Camp Takoda, the autism camp hosted by Easter Seals and run by the Autism Society of McLean County.

For good or for bad, I had my hesitations about signing him up, wondering what kinds of behaviors he might imitate or how he would feel about being identified with other kids who were at all ranges of the spectrum.  Before even getting out of the car on our first day of camp, I quickly spotted a camper with a helmet to protect himself from self-injurious behaviors, and walked past children who were humming, rocking, and engaging in self-stimulating behavior.  Counselors wore T-shirts highlighting the symptoms of autism.  One sported a pink shirt with the caption, "start seeing autism."  When I saw my son settled with a friendly group of boys about his age, I felt better and bid him the farewell he was so anxious to get out of the way so he could get on to his day.

Each afternoon Josiah came home from camp talking about the exciting things he had done: the boat rides, the fishing, being afraid of the zipline, the bulls-eyes he made in archery, shooting a BB gun for the first time, the water games, and a scavenger hunt.  What a week of FUN he has had!  He has also shared with enthusiasm the names of the boys he has made friends with.  There have been no questions about anyone's behavior, no wondering why he is at camp with children who may act a little differently (or very differently!) than what he may normally see.  And last night, as I pondered his week and how he has responded, it hit me why.

When Josiah looks at his new friends, his untrained eyes do not see autism.  He sees children with names, particular likes and dislikes, who say things that make him laugh and have shared his exciting adventures.  He sees KIDS. 

I also can't remember when I have seen so many parents gaze upon their children with such looks of love, parents who have learned the lesson Josiah's innocence has taught me this week. Surely, there are times when we need to stop seeing autism.

"For the Lord sees not as man sees: man looks on the outward appearance, but the Lord looks on the heart."  1 Samuel 16:7

Ten Things Every Child With Autism Wishes You Knew

The book is a great read for parents, family members, educators, or anyone else who desires to better understand autism.  This list is the next best thing.

eye opening

Last night I was on the Chosen Families blog reading one of my favorite authors, Sarah, who has two sons with ASD (autism spectrum disorder.)  She mentioned this You Tube video that simulates what it is like for a person with autism or ASD to walk down the street.  Wow.

when autism hits home

This year is not the first year I have posted information about Autism Awareness Month, as this disorder has a special place in my heart.  An interest in autism is what drew me into the field of special education over 20 years ago, and I have watched with alarm as the incidence has grown from 1 in 10,000 then to a recently reported 1 in 50 today.  What I didn't know was how the bulls eye caused by the rise in incidence would someday zero in on our family.

Doing kindergarten with Josiah this year has been a blessing in so many ways.  The structure of our school days, using workboxes and picture schedules (clues?), and watching him learn to read and soak in science and math has been a joy.  Our youngest is growing by leaps and bounds, and has many gifts.  He has come so far in the 2 1/2 years since he was identified as having ADHD and we started the Feingold diet, and even more since we eventually tried the gluten and casein free diet.  Temper tantrums, aggressive behavior, and anxiety have all subsided and given way to symptoms that continue to remain but are highly manageable.  My concern for him has waxed and waned over the years as there have been times I've felt Josiah's functioning was fairly typical and other times when I've seen things pop up that are concerning.

It wasn't until very recently the concept of Josiah actually having autism began to cross my mind.  We were in the midst of what I wanted to call a "reevaluation," simply another look at what is really going on with my boy who continues to grow in bursts and starts through challenges and victories.  As we discussed our lingering concerns with the psychologist who would be evaluating him, I began to sense there was something deeper there.

Something that might explain:

-why he has always had so much trouble with imaginative play, especially when he's alone. 

-why toys like Imaginext do seem to draw him in a bit more than other toys, after he has watched the video and has a script in his mind to follow while playing with them. 

-why he does play so well with his sister, because she can scaffold a story for him which allows him to join in where he can find places in the story line that fit into his imagination.

-why Josiah has melt downs over little things like backing out of the driveway before he gets his seatbelt on, having a clean spoon for every new food on his plate, and other seemingly insignificant battles that mean the world stays nicely ordered for him.

-why he constantly crashes into the couch, kisses us in passing on our legs with all his might, presses himself into the dog, hugs complete strangers, spins around at least 10 times a day, and flaps his hands when he gets excited.  (Interestingly enough, his sensory issues wax and wane quite a bit depending on how he is eating and what supplements he may be taking, leading me to continue to believe that the gut plays a huge role in autism symptoms.)

-why he has trouble understanding personal boundaries and finds it difficult to track when standing in line or participating in group games.

-why I spend so much of my teaching time making accommodations that allow him to be successful in completing his work.

-why the most predictable and consistent aspect of every day with Josiah is its unpredictability and inconsistency.

When we met with the psychologist who tested Josiah a couple of months ago, she said she saw in him a "splash of spectrum."  He has enough symptoms to be identified as having Asperger's Syndrome, a mild form of autism.  I would venture to say that Josiah's Asperger's itself is on the mild side (again, I have to give diet credit here!) as he is a friendly little boy who is drawn to people (not aloof in his own world as some children with autism may be) but struggles with understanding social rules and boundaries, struggles with play skills and has some fairly significant sensory integration issues.  Like many children on the spectrum, he also struggles with fine motor skills and written expression.  Though he is also gifted in many areas, it is difficult for him to access the knowledge he does have stored away in his mind, leading to frustration when he knows the answer to a question but can't say it.  It is interesting how his brain sometimes makes up the difference--he has trouble with reversals which is often apparent in writing and sounding out words, yet he can already read at or above his grade level.  (It's that amazing memory that kicks in!)

And the ADHD?  Apparently many children with ASD (autism spectrum disorder) are first identified as having ADHD.  We were told, too, that it was good that Josiah was not put on medication when he was younger because it most likely would have made his symptoms worse.  I stand amazed to see more evidence of God's hand on us through this journey.

Josiah's prognosis is excellent, and we look with trepidation but also excitement at what is ahead.  There will be challenges and difficulties to overcome.  We continue to share our journey to encourage others, raise awareness, and also to help those closest to him have a little bit of a peek into his world.  God has already done great things in this little boy's life, and we continue to look to Him for wisdom as we move on from here.  We long for God's desires to guide Josiah's life.  Our prayer is that he may know God, and make Him known, giving Him glory as he learns to be the boy and then man God made him to be.  That is the supernatural dream of any Christian parent, only to be accomplished as God works in and through his life.  We greatly covet and appreciate your prayers.

incidence of autism continues to rise

The incidence of autism is rising, and only part of that can be explained by greater awareness.  Please read this link to an article in the Huffington Post.

"Today (March 21, 2013) the CDC announced a 72% increase in the diagnosis of autism over the past four years. One of every fifty children aged six years to 17 years has an autism spectrum diagnosis. Ten years ago, the number was 1/150.

The previous two decades saw a 600% increase in autism diagnosis and experts have said that 200% of that could be attributed to better diagnosis and more awareness of autism but the other 400% was caused by changes in genetics and environmental impact on genetics."

April is Autism Awareness Month

The newest autism statistics were released just over a week ago.  There are now 1 in 50 children on the spectrum, and 1 in 31 boys are now affected.  That is a 72% increase in the past 4 years.

 

Facts about autism, and these are a few years old:

 

As many as 1.5 million Americans today are believed to have some form of autism.

Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a rate of 10-17% per year. At these rates, it is estimated that the prevalence of autism could reach four million Americans in the next decade.

The United States spends $90 billion per year to provide care for the country's 1.5 million autistic children and adults. The Autism Society of America estimates that costs could balloon to $200 billion to $400 billion by 2013.

Autism is now considered the fastest growing developmental disorder in the United States.

Autism is more common than multiple sclerosis, cystic fibrosis or childhood cancer.

Autism is the most common of the Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by "severe and pervasive impairment in several areas of development", including social interaction and communications skills.

Autism is a spectrum disorder.

The symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe.

Autism is consistent around the globe, but is four times more prevalent in males than females.

Autism knows no racial, ethnic, or social boundaries.

Family income, lifestyle and educational levels do not affect the chance of autism's occurrence.

The age that most children start showing symptoms of autism is between 18 and 24 months.

Since autism can be reliably diagnosed as early as 18 months of age, intervention can begin during the period when the brain is most malleable.

Early intervention can result in a significant increase in IQ and language ability and a decrease in support services needed later in childhood.

No one knows exactly what causes autism in most cases, but scientists think that both genetic and environmental factors might play a role.



the brain/gut connection

In the past couple of years, I have read a lot about the connection between diet and behavior.  If I could narrow what I've learned down to the three most helpful books, they would have to be the ones listed below.

Why Your Child is Hyperactive

by Dr. Ben Feingold

Dr. Feingold was a pioneer in learning to understand the connection between hyperactivity and food additives.  He did not set out to help kids with hyperactivity but stumbled into the work while treating a patient with allergy symptoms.  Even though the information is 50 years old, it is still a great place to start when considering natural solutions for ADHD.

Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders

by Dr. Kenneth Bock

This book helped me understand the link between the rise in autism, ADHD, asthma, and allergies.  While all manifesting in different ways, these disorders actually have a similar underlying root cause: how the body deals with toxins.  While some of it is technical, there are many success stories and help in understanding how DAN doctors are looking at the body and treating these conditions.

Gut and Psychology Syndrome: Natural Treatment for Autism, Dyspraxia, ADD, ADHD, Dyslexia, Depression, and Schizophrenia

by Dr. Natasha Campbell-McBride

This is my most current read on the subject and really seems to get to the root of many neurological disorders: the condition of gut flora.  The author of this book was able to help her own autistic son recover through diet, and has helped hundreds more to find help and healing through implementing her GAPS diet.  With autism on the rise (1 in 55 boys are now diagnosed) it would be a good read for anyone concerned about what may be causing autism and related disorders.  While my child-bearing years are over, I have 3 children in my home who may be parents someday.  After our own battles linking diet with health and behavior issues, I want to consider these things seriously.

It will be interesting to watch what continued research in these areas will show.

Happy reading!

April is Autism Awareness Month

Long ago, in a galaxy far away (before kids), I was a special education teacher.  My interest in entering the field first came about because of something called autism.  Not much was known about the disorder back then (about 20 years ago) and there is still too little known about it today.  I remember vividly that the incidence of autism at that time was listed as 1 in 10,000 children.  Today it is 1 in 88.

I had the privilege of teaching several children with autism, and working with their families.  That experience taught me a great deal about the intensity of daily living with children who are overloaded with sensory dysfunctions, and who are often unable to relate socially with some awkwardness at best and exhibit complete dysfunction at worst.  I saw the devastation of one mother whose 3 sons were all diagnosed as being on the autism spectrum within 5 years.  In those not-so-long-ago days, that was extremely rare.

My heart goes out to families of children with autism.  There are many brave parents fighting daily for their children, who have hope not for a cure (they are rare) but simply for improvement.  Some are seeing victories, others are ready to give up, most hang on somewhere in between.  There are incredible financial costs.  Parents wonder what the future holds for their children when they grow up and especially when they are no longer there to care for them.  But most of all my heart goes out to the children themselves who are affected, these tremendous bundles of God-given potential trapped inside a body that does not function properly.  They are no less precious to God in their affliction, and they teach us to have a proper perspective on the incredible trust and responsibility we are given to develop and use our abilities to serve God and others when our bodies function as they should.

The odds, 1 in 88, with a rapid increase over only 20 years, are what most disturb me.  I may not personally know or deal with anyone with autism now, but I'm concerned for my grandchildren, as well as for this and the next generation.  I believe there is more going on than an increased diagnosis, that there truly is an increase in incidence. 

Seeing diet used in the treatment of autism is not new (from the early days I read about "cures" from removing milk or adding the right combination of vitamins), but the breakthroughs of the past several years are.  Many children with autism are known for craving carbohydrate foods and dairy to the exclusion of almost everything else.  Is it any wonder that a GFCF diet has helped some of these children?  More recently, GAPS has been used by some brave families willing to put forth the effort.  One of the most remarkable before and after videos I have seen can be viewed here, on this mom's blog.  She will admit things are not perfect.  But a year later, they are better.  Amazingly better.  It gives me hope for the future of autism.  I'm praying for more breakthroughs.