the climber

At our local children's museum there is a play area that wins all awards in the eyes of my oldest two children.  It is a climber, a labyrinth that winds itself around and up from the second to the third floor.  Both Micah and Rachel hesitated years ago, the first time they saw this climber, but Micah quickly overcame his fear and got busy with the task at hand, and since Rachel did whatever her older brother could do, she happily followed him wherever he might lead.  The two have been climbing partners ever since.

Even with much coaxing, Josiah has never been comfortable about the climber. From the time he was a toddler, he's watched his older siblings trot off and spend most of their museum time there, but he's never had much interest in venturing in.  With plenty of other sensory-related fears to help him tackle, I have never been one to urge him forward.  But today, we found ourselves at the museum together sans older siblings.  Sadly, they have outgrown these sweet childish pursuits, quite literally as they cannot fit in its small spaces with their adult-like bodies.  When we reached the second floor, Josiah and I found ourselves in front of the climber.

"Why don't you try going in?" I asked Josiah.  He shrank back but looked intrigued in spite of himself.  "Look at this, Josiah.  If you just go in this far," I pointed to the first carpeted rectangle, held up by diamonds of well-secured wire, "you can get right back out.  Just try it and see how it feels."

Feeling a bit braver, Josiah took a step into the climber.  "Now look," I said.  "If you climb to this next place, you can get right back down and come out.  What do you think?"  Josiah tentatively climbed up one rectangle.  He flashed a grin, got down, and came out.

For the next 25 minutes, I watched Josiah venture just one step further and then another, turning around each time to make sure he could find his way back out of the maze.  Finally, feeling completely confident, his face lit up with a smile and he began to climb, around and up.  I heard his triumphant little voice long after his body disappeared from my view.  "Mom!  I made it to the tippy top!  Woohoo!"

Today Josiah learned a lesson about the joy of overcoming fear, and taught me one in the process.  There are times I look at his ASD diagnosis and in every way, it resembles the tangled labyrinth of the climber.  I understand enough about how he is wired to venture in a few steps toward helping him tackle the next challenge, then timidly turn around and to find my way back out again, denying and ignoring the unique ways we have to face situations.  I balk, just wanting things to get easier rather than having to find the patience and creativity to meet the next difficult challenge.  Looking up, there are places I cannot begin to imagine we might have to climb.  Concerns about handling Josiah's food sensitivities as he grows, facing academic and social issues, and eventually letting this impulsive child climb behind the wheel of a car loom like insurmountable obstacles between Josiah's childhood and the day he will launch off on his own as an adult. 

I am grateful there is a Voice right by my side, to encourage me, guide me, and give wisdom for each step, the loving presence of a heavenly Father who knows Josiah better and loves him more than I ever will.  There are things about Josiah's upbringing that I need to consider and think about that may be variations from that of a typical child, but I'm also learning that much of what I need to give him is also the same as that of any of my children.  Josiah needs love, he needs to learn grace and know the victory Christ has won for his sin, he needs encouragement, and he needs to know how to access the God of the Bible who will walk with him through every challenge.

I'm gaining confidence that someday I will hear a much deeper voice say, "Mom!  I made it!" 

There is something inherently joyful about having the confidence to climb.

getting ready for school

It's been a wonderfully busy summer.  The kids found their niche in activities they enjoyed, we spent plentiful time with the neighbors (much of it poolside while our kids had swim lessons together), and we had a fun family trip to top things off this past weekend.  It's so hard to believe school starts in less than a week!

To give an update on Josiah, the private school where we had planned to enroll him called me mid-summer and asked to set up a meeting ASAP.  I had a sinking, empty feeling in my stomach about what was about to transpire.  After receiving his evaluation from the psychologist, they recommended switching him to public school as an opportunity to have a strong start and receive more services.  It was a time of learning something of God's wisdom being greater than my own, and humility in having to undergo such a meeting at all, swallowing all my "but you don't even know him yet..." comments.  Yet through it there was a calm assurance that God is sovereign as He leads in this journey, and as always He can be trusted.

Our initial meetings with our local public school have been nothing short of incredible.  The principal was on the phone welcoming me within hours after I emailed her, and she has done everything she can to make us feel at home.  The sensory room at Josiah's school is top notch (wish I had one here!) and he will have access to the help he needs from his first day with adjustments and an IEP meeting as needed once he has a few weeks of school under his belt.  I still have some jitters about how things will go, but have seen so many ways God has been working in preparing both Josiah and his mommy for the days ahead.

Another help this summer has been the start of occupational services through Easter Seals.  Our OT has been wonderful and Josiah has responded well to the Alert program she is using with him.  His "engine" (body speed) tends to run a bit on the fast side most of the time, and together we are implementing strategies to help him become more aware of his body and tools he can use to slow things down. I am learning words like "proprioceptive" (input to muscles) and "vestibular" (having to do with balance), and why swimming and gymnastics seem to be such favorites.  His body craves the input those activities give him!!

It's a humbling experience to parent a child with special needs, and even more humbling when having to work with others regarding his educational plan.  I think back to the days when I worked as a special education teacher and wish I knew then what I do now about how it feels to be on the other side of the table.  In the midst of it all is a child who is precious, made in God's image and just the way He intended him to be this side of heaven.  That of course doesn't mean we aren't going to do everything we can to help him learn to live with and manage some challenges. 

Please pray for us, especially Josiah, on this journey!  We so appreciate it.

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

learning curve

 

"Be joyful in hope, patient in affliction, faithful in prayer..." Romans 12:12

 

Two months have passed since we received Josiah's diagnosis of Asperger's Syndrome.  There has been time to read, observe, reflect, and implement.  Much of it has been a time of waiting, and more waiting, to receive therapy.  Most of all, it is a time to pray and ask God to make our hearts open to things He has for our lives.

So what about the ASD (autism spectrum disorder) diagnosis?  There is so much there I could not see before, but am noticing with opened eyes.  Inconsistent eye contact, impaired play (which we noticed but now understand a little better), desire for sameness, pronounced sensory issues, some social skills difficulty, and some dysgraphia all point to a correct diagnosis.  We still feel his symptoms are mild but there are many challenges we look forward to helping him overcome or at least manage through therapy.  He's on the waiting list for a social skills program and speech services through ISU that should begin this fall, and he will begin occupational therapy to target sensory issues sometime this summer.  Next week he gets to go to a day camp through our county's autism society and Easter Seals that sounds like a ton of fun!!

At my husband's request, I contacted the private school where Micah and Rachel spent their early elementary years.  That was when we saw God had gone before us: they have hired a special education teacher who seems like she will be a great resource in meeting some of Josiah's special academic and social needs.  Josiah spent part of an afternoon visiting the first grade class, loved it, and is going to try first grade there next fall.  The class he will be in is small and looks to be fairly full of little boys!  We are looking forward to the social interactions school will afford him--not from a homeschooling standpoint as much as an ASD standpoint.  While I can see pros and cons to homeschooling versus going to school, this is how we sense God is leading at this time. 

As parents, we want to embrace all God has brought us.  The years since we have added Josiah to our family have been challenging but also full of His grace.  A few months ago we saw glimpses of what life would be like if we didn't have the dietary tools He has placed in our hands: most certainly we would not call Josiah's symptoms mild.  Instead what we saw briefly was a little boy out of control.  To think of where we could be makes me so much more thankful for where we are through many answers to prayer--both others on our behalf as well as our own pleas for help.

The best gift I know to give Josiah is my love.  Whether it is spending a Saturday making homemade gluten free, casein free, additive free (and the list goes on) food, or patiently (I hope!) redirecting him when he gets "stuck" while playing with his friends, or laying aside my desire for time alone to come up with a new way to keep him entertained in play, my prayer is that my own response as his mom would not be one of complaint but gratitude.  I say it is my prayer, because I am much in need of my Potter to shape a clay that is yielded instead of stubbornly set in my own way. There are struggles to parenting any child; what I face are just the unique difficulties in meeting the special needs of this particular one.  Somehow, I trust God can continue to give me a greater heart of compassion for my special little boy, and perhaps words to encourage others who walk through similar challenges.  So each morning I take a deep breath, offer up a heart that has yet to be perfected in love, and walk through the day with a Father willing to teach me more of His compassion.  Josiah is a gift to us, and we know God's ways are good.

"Neither this man nor his parents sinned, but this happened so that the work of God might be displayed in his life" John 9:3 

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.

swimmer with Asperger's

Our hearts were encouraged to see this article in our newspaper today.  Way to go, Josh!  I wish you knew what your story and faith means to our family.

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.