Friday, April 26, 2013

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.

1 comment:

Mom.NanaN said...

He is an amazing boy and has taught all of much. All of you are in our prayers as you continue to guide Josiah to discovering "himself"