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.

seems fitting

remembering GG

Because today was her birthday.  How I wish Josiah could have known her!  They would have loved each other.

 

She was Eric's grandma, the kind of grandma who always had candy in her cupboard, games on the table, and a bed ready for anyone who wanted to spend the night.  She loved the kids, and they loved her.  I can't count the number of times I saw her with a child on her knee playing "ride the horsey," or a baby in her arms.

 

And of course, we all loved her bubble bread.  And teased that she had probably burned it.  Because she did, once, long before I knew her.  I feel privileged to have the recipe in her own handwriting.

 

 

Bubble Bread

 

24 frozen rolls thawed out at least 2 hours (She always used Rhodes rolls)

Melt 1/2 stick margarine/butter

 

Dip rolls in butter, sugar, and cinnamon.  Stagger rolls in angel food cake pan.  Let rise about 1 1/2-2 hours.  Bake at 350 for 40-45 min.  Turn upside down on plate to cool.  Frost with powdered sugar frosting.

 

For a gluten free version, I'm going to try using Pamela's bread mix for the rolls, and will update if it works!

two in braces

 

Though we are hoping one is almost done!!

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.